Where Are you Going My Little One?

My daughter, my baby, turned six yesterday.

She is beautiful and kind and quick and loves to curl up sweetly in my arms to start the morning. Each day I am equal parts terrified and delighted to be her mother. I know I will mess up a lot. I have already expected so much from such a small person, but she rises to the occasion, and I suppose, ultimately, so have I. She makes me rethink my inner core and calibrates my moral compass like no one else I know... except perhaps her brother.

And she loves her brother so much. She cares for him, she cares about him, and she cares about his future and the futures of his friends and classmates. Though she is always aware, and works hard to support his needs, she gives him only enough room to provide for disability, and after that she bickers with him as any other sibling pair might do. They fight over blankets in the car on road trips, and she saves half of almost anything good she has so he can have some when she gets home. The natural and easy way she accepts differences by not bothering to mention them unless she doesn't understand something, makes me have hope for her generation that there will be more tolerance in every way. She doesn't stare, she says "Hello."

She loves to drive in her Daddy's car, begging him to take off the roof of the Jeep, and sings along with the cranked up music, asking him to take the long way. She picks up jingles from television, and sings them too, with a rock star voice.. .who knew that the insurance commercials could sound so powerful? And when she's watching tv, she understands marketing, thinks that little girls should look like little girls, and not minitature grown ups, and knows to say "Can you add this cool toy to my list?" instead of flat-out asking for it.

She's not boring. She can carry a conversation, and knows who the president is, and about reproductive rights, the importance of voting, and with her proclamation: "You should be able to love who you want to." it's clear she supports equal rights for all when it comes to marriage, raising children, and living life. She has a crush on the boy who has long wavy brown hair, but has some thoughts about living with us for a long time. She's not yet sure she wants children when she grows up, and has thought about going to University locally (ahem, that would be Stanfurd). Her only thoughts on "leaving us" are to get a cool house with her brother to help him out.

She can be counted on. When there are times I urgently need her assistance with something because I don't always have enough arms to keep everyone safe, she makes it clear that every talk we've ever had is stored in her head, and she remains calm and helps exactly as she has been taught to. She always locks the gate behind her.

She is too much, over affectionate, loud, bouncy, "on fire"...she is a cross between Tigger, and me, I suppose, with a dash of initial reserve that is just enough to remind me that she is my husband's child too. She mostly puts all of her energy to good use, and though I wonder who she is when I'm not around, when we got a note sent home from her after-school care it included an award:

For being wise beyond your years, listening to others, and seeking not only to be understood but to also understand others.

I am trying to remember that she will only be this small now, and she is already taller every day. When she lies down in the tub, her hair streaming out like a mermaid, I can't help but notice that her feet touch the other end, and in another month or two she will need to bend her legs to to try to get that calm of peaceful floating. We'll need to find another place where she can feel light like that, because I want her to carry that feeling with her as she grows up and has more responsibilities.

*******

My precious girl, I love you more than all the leaves on all trees that 

have ever been and ever will be, and then I love you more. 

You are my best-favorite.

Happy Birthday.

Every Kid Is A Person

I wasn't asked to have a conference with Lucy's teacher, Ms. June, but Lucy asked me to make an appointment just the same. I sort of wanted to check-in anyway given that my daughter is already a different kind of person than I was at her age with her own way of learning things and her own worries and passions.

She is enough like me that I see myself --my mannerisms, for example, and I can hear my inflections in her voice, and yet she is enough different that I do not always understand what makes her tick when I tock. So I like to get other people's perspective on her whenever I can. We have lots of people who report about Jake to us, since he can't tell us his stories himself. There is even a journal that travels back and forth to school each day for Jake, but my daughter with her 31 other classmates... it would be impossible for any teacher to write a note about each child, each day.

Sometimes I get anxious before I meet with teachers; education is different than the business world where I am generally confident. I have a reverence for teachers, and admiration for their service. And they do something I'm not sure I could do each day. Teachers, especially those that have been around for awhile,  really know kids, so any comment about my child from a teacher is founded on having known hundreds and hundreds of children, and those opinions carry more weight to me.

Of course the meeting went just fine. Lucy is on track and she is a good kid and she has friends, and she keeps writing the number 4 backwards. I saw a sampling of her work where I can see how much she has improved in just the last month with her letters and her coloring. Her pictures have great details and she seems to get the essence of the stories she hears. She's doing well. I was relieved, but I can't help but think there is more we should be doing.

Lucy's teacher and I chatted a bit more,  debating piano lessons versus violin, tennis instead of soccer. Then about how being tall generally gets you more responsibility at an earlier age, at least that's what I experienced. And when Ms. June mentioned that Lucy shows a nice maturity she quickly told me about something that happened just today.

There is a 'little person' at Lucy's school, and apparently some children had teased this boy at recess. When Ms. June took them back to the class (after having the story related to her by the yard duty aide) she sat the children down to have a discussion about differences. They talked about how it would feel to be made fun of for something that is just a part of you. They talked about all kinds of differences there can be, and Ms. June said that as soon as the conversation started Lucy raised her hand. I am paraphrasing but I have now heard the story from both Ms. June and Lucy, and they each related about the same thing.

With conviction, Lucy told her classmates:

My brother has autism, and he has a wheelchair. He's different. But he still likes to decide things and make choices. We offer him two choices because he doesn't communicate like we do, but he still wants to decide things. Every kid is a person, so you should just say, "Hello." and ask, "How are you today?" because even if they don't talk like you do, you should still say hello.

There I was, worried about how far along she is in reading, and stressed about the number four... and as it turns out, some of the hardest things to teach, respect, accepting differences, presuming competence..she's understands those things. She knows her non-verbal brother has opinions and that he deserves to be heard. She knows that "every kid is a person."

And perhaps I am most pleased that she has it written on her heart to stand and be heard. I'm grateful that she could face her peers and unabashedly advocate for that young man, and she did it on her own without prompting or practice. I am so proud of her.

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.

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.

  *****

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

Signs of Autism

In our family, we make medical decisions using science, facts, and data, and we believe in keeping our children healthy, so we vaccinate. I have never thought that vaccines caused my son to be autistic.

Except for that one time.

Lucy was a perfect baby, not that she never cried, or blew out a diaper, but she held her perfect little round head up, and rolled over on time, and she just looked. so. perfect.

When she was four months old I took her for her routine vaccinations. She was in the 90th percentile for height, the 75th for weight..right on track, and the nurse gave her 3 shots: HIB, Pneumococcal Prevnar 7, and inactivated  poliovirus vaccine (IPV) She got little round bandages stuck to her little chubby leg. She scrunched up her face to cry and I nursed her a bit, and tucked her back into her little outfit, and put her in her little car seat where she slept for two hours.

When she woke up at home I reached in to get her and she began to wail. "Poor thing, must be starving"... so I pulled her close and set about to nurse her... and she twisted her head this way and that, thrashed about and screamed. And screamed. And screamed. Every time I tried to comfort her, cradling her in my arm like she was a bouquet of flowers, she just screamed at me. She wouldn't eat. I panicked.

Oh my God. My child had her shots two hours ago, and now she is a different child. This is how it is, one minute the child is there, then they're gone; that's what I've heard. My daughter has autism. Oh my God.

In an instant, every single piece of science went out the window, and anecdote took hold. My science was my child,  my screaming child.

I called the front desk of the large-ish medical foundation, and put an urgent message in to the doctor I had just seen. I made sure the nurse wrote down "adverse response to vaccines."

The doctor called me back within 10 minutes, heard the sound of my voice, and Lucy screaming in my arms and told me to rush right back in. The short ride to the doctor's office is only longer when I am carrying my children in utero, and my contractions are three minutes apart.

Lucy was calm in her car seat "bucket" on the way to the office, but that was no consolation to me. We have spent years driving our son's autism around trying to calm him down enough to sleep. A kid that is quiet in the car doesn't mean anything. When he was younger, we replaced the tires almost as often as we changed the oil and that kid with autism still screamed when the car stopped.

We were ushered into an exam room, and I left Lucy in her car seat until the doctor came in just a few minutes later. The doctor looked calm, collected and very worried all at the same time. She quietly said, "Show me exactly what's happening."

Lucy squirmed and whimpered when I pulled her out of her precious floral-patterned bucket. I laid her on my lap then picked her up and brought her close to nurse. She started screaming and thrashing. Her face turned all red. She was not the same baby that the doctor had seen a few hours before. The doctor helped Lucy try to latch on, to no avail. I got tears in my eyes.

Oh my God. Oh my God. It's all true: Vaccines cause autism. Jenny McCarthy, Age of Autism, Green the Vaccines, Generation Rescue.. they are all right, somehow, with no scientific evidence, and I just gave my precious baby all of those shots. I broke the baby.

I sat there, sniffling and holding my crying child,  pulling her closer and closer to me, afraid now that I would drop her and make things even worse.

The doctor took a step back, sat on the rolling swivel stool that all kids love to play on, and moved herself across the floor towards me again. She very gently took my left hand and moved it slightly. I was still cradling Lucy's head in the crook of my left arm.

Lucy turned her head towards my breast and started to nurse. Her body was still a little squirmy, then she calmed down and sucked away, trying to fill her tiny stomach up.

"You were pinching her thigh- where she got the shots. You were just holding her leg, and pressing right where she got the shot." I started to cry, not a lot,  just enough to release all of that terror that had built up." I think you are okay now --that she's okay. Call me later if...just call and leave a message and let me know how things go the rest of the day. And come back in if you think it was any thing else."

"You know I'm not a paranoid mom? You know I wouldn't have called, but Jake's autism, and, and, we had the vaccines and, and, I just feel so stupid."

"Don't feel stupid. I knew exactly what you were thinking, and I know you're not a paranoid mom. You're not crazy. It's okay. All of that flashed in my head too; but now we know. So, let's not pinch the baby's leg any more and everything should be fine. Sit awhile and feed her. Take a deep breath." And with that, she left the room.

My baby girl does not have autism. One day, after her vaccines, she screamed a lot when I squished her little leg.

I can't imagine how I would feel if Jake had been a "typically developing child" as some parents of children with autism believe their child was; losing language and the ability to communicate their needs. Jake was different from the beginning, the very, very, first-day beginning; at least I thought he was. So I have never felt like some thing was taken away, or that he was somehow damaged. He has always been a whole, healthy, child whose brain worked differently. But that feeling of thinking you've had something taken away must be such a painful experience for those parents; the parents whose recollections are that their child did change overnight, and stayed changed and not because of a little boo-boo on a chubby baby leg. But I know that's just not how it happened with my son and his autism. I'm guessing, in our case, as in many or even most other families, this is a genetic issue which will be brought to light in some number of years down the road. Could there be an environmental insult? Maybe, probably. I'm sure it's complicated. That's why I'm waiting for the data before I go blaming anything.

What worries me is that I am a person who does believe in science, who has weighed the whole of evidence against the righteous hand of anecdote, and I have settled firmly on the side of scientific proof, not only for the health and welfare of my own children, but for society at large. If I could be swayed in a moment of dismay because of all of the "Tabloid Medicine" that abounds, what happens with someone who gives the pseudo, or non-science, equal weight? Those people who think that anecdote is somehow equal to a properly done scientific study? If all of that can go running through my head pell-mell given my daily practice of relying on data in my decision making, then what happens in those other families? I was so quick to turn to the anecdote and to rumor in that moment, and I'm someone who has access to good information. But good information can be harder to find. It's difficult to compete with celebrity endorsers and personal experience. It is a hard sell when all you have are numbers, and black and white pages of scientific jargon.

*****

It's time for us to all turn towards science. I'm not saying we should abandon completely the spiritual, or the intuitive parts of our nature, because I am aware that some things cannot be fully explained by science, and most moms know their kid better than anyone else ever will. Don't throw out everything you have learned through life experience, but, in general, as a rule, why don't we all trust the science just a little bit more, and guess a little bit less. And those of you who do vaccinate, or use medications, or believe in the scientific method, let's start talking about it. Let's not keep our mouths shut when people start bragging about how ossicilium cured their cold in "just 7-10 days", or that the echinacea they took last year, prevented them from getting the flu last month.

And perhaps we should start insisting that the science in the news be reported by someone with even a modicum of understanding of science. If that's all too much, then at the very least, let's all decide, right now, that celebrities will have no part in the decision-making process when it comes to making choices for our health, and our childrens' health.

When You're Doing it Right

When you're doing it right, no one notices.

I used to work for an awesome company that was Very Big and Iconic, and when I first went to headquarters I remember feeling like no one really noticed when I was doing my job the right way, or the best way, or the smartest way... what got you noticed? When you messed up.

I think parenting might be a little like this.  We always know the kid at the party who has bad manners, but do we praise those kids who pleased and thank-you'd their way around our house for two hours, then thank their parents for doing their job. Probably not.

Anyway, I am taking this moment to praise myself because my daughter had to do an "All about ME!" poster for school and she chose "broccoli" as her favorite food. Actually she chose "meat" first, but when I asked her to be more specific, she just switched to broccoli.

The mere fact that she did not offer up: cotton candy, ice cream, doughnuts, pixie stix, or powdered sugar made me feel that, at the very least, in this one category, we are doing just fine.

It's Only Kindergarten

Change. The only constant in this world, and I think I might hate it. Oh I pretend to like it: time change, when we get to sleep in, or see the sunrise. I like to change the color of my hair. Really I just love a new haircut. I like to go on a road trip and get a change of scenery, or try a new cocktail at a new bar. But really, none of those things are very risky. Not at all. They have very little consequence. Even if I bleach my hair out to Gwen Stefani white I can get it back (or most of it, what hasn’t fallen out) back to a normal-ish blonde color that doesn’t make my mother gasp.

I like to joke that “apples don’t fall far from the tree” when it comes to Autism. Jake is such a combination of the people in my family, and I can see parts of his personality in each of us: his sense of humor, his lack of dexterity, his determination, his migraines, his struggle with communication, even if it is exaggerated in how he demonstrates the behavior, I can almost always get a glimpse of how Jake became Jake… including his need for things to be the same; and that he got from me.

This doesn’t mean I’m not flexible, I am, but I always have multiple threads going, so even if it looks like spontaneity, I am hopefully already prepared for that possibility. I feed the kids at the same time every day, even if it means we add in meals with other people at other times. Jake’s body clock does not alter with season, or place, or time zone, so that means he eats 5-6 meals in Hawaii, and goes to bed with hours of sunlight left in the summer. He has worn the same brand of pants for three sizes now, and I have been known to buy the same shoe in two colors if I really like them, or two pairs, for when one of them eventually wears out beyond repair.

I work hard to get things to a “steady”. It’s not settling for anything, I just want to keep the boat afloat, with everyone on it, with provisions and direction. Not to go overboard (ha!) with the metaphor, but I don’t even care sometimes if we have the sail up. I just need to know where we are headed and know that our crew is ready. We can float in one place, as long necessary, if we are together and (mostly) happy.

So Lucy is starting kindergarten in the fall, which means we need to decide now where we want her to go, and I am a wreck. Change. Again. Or maybe not. Or maybe. Aaaaghhh.

When Jake went to kinder it was sort of a surprise. I thought he was going to stay one more year in his early intervention preschool. I thought I had time to ponder the choices, visit schools and determine which disability we would try to place, autism or CP. Instead I was sort of bombarded with “Uhm, Jake is really big (tall) and don’t you think he should move on to kindergarten so he doesn’t step on any little ones who are just entering preschool?” and somehow I nodded believing that height had something to do with matriculation.

Then I visited two classrooms and picked one. I made the wrong choice, or a bad choice, because I’m not sure the other class would have been right, but I know where he went was wrong. I didn’t ask the right questions, and when I took Jake for his first day I was greeted with aides who received no direction, and a new teacher, who spoke very broken English, as it was her very-distant-second language. The class had a mix of kids with such a wide variety of disability that there was no teaching. After the first month I learned that Jake spent most of the day in a Rifton chair buckled in, and rolled from table to table. I spent the first semester in conferences every week, and the second semester trying to find another placement. I felt like a horrible mother. We got him a new placement, and two years later, when he needed a different setting again, we found him Wunderskool. Now he is happy, and healthy and thriving, and as we settle-in to the back half of his second year there I am finally breathing. I had not felt steady since Jake was three.

My close IRL friends are probably, no, I know they are done with this conversation. I keep talking about where Lucy should go to school because, while I am generally a very decisive, opinionated, independent thinker, in this case, I want someone else to have the answer, tell me it’s the right thing to do. I have at least one very close, trust-worthy friend at each possible location, so I can’t even use the “Who can care for my child if there is an earthquake and they need to take her for three weeks?” Because, yes, tragically that is how scary my brain is…

This has taken up all of my free-thought, and a lot of my previously-allocated-for-other-things thought too. I feel a bit silly being so upset by it all, but last time I did this I screwed up, and I certainly can’t handle that feeling. And I’m not having any more kids, so it’s sort of the last chance I get to do this right. And, most importantly, she is a neat kid, who is smart and funny and I don’t want to send her to the wrong place.

I know what I want: I want same. I want no change. I want to put off for another year, or two, any sort of thinking about change, but I need to really think because there are options here, and financial impacts, and logistics to consider.

So I have been on the tours. I have all the paperwork. I’ve even asked the four-year old what she wants, because, you know, that's responsible parenting. She very capably decided that she could go to at least two schools if the hours were different, and then she put her hands over her eyes and said it was “much too hard to decide."

I agree.

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 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."

Shattered

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

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

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

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

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

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

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

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

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

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

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

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.

Grocery Shopping with Coupons

Takes about an hour longer than  it would otherwise. Luckily  we were fortified by a bagel  which we procured during a morning visit with Leila and her mom Pollyanna. Here are our cute kids at the table.

She's Incredible

before breakfast...


and later at the Halloween party...

Every Action

has an equal and opposite reaction:

Jake off of his Adderall XR:

• more verbalization
• more silliness
• less able to sit in class
• more clearly visible by his reactions that he is "there" because he is making sounds and laughing appropriately at funny things
• I feel like I need to research every drug on the market to find him a new drug that will help him focus without losing what little verbal ability he has.

Travel to Tahoe, Southern California, East Bay and everywhere else we went this summer:

• Lots of great memories for kiddos and grownups
• Nice things to reference in the car when we there is a crybaby Lucy who misses her cousins
• Out of control laundry and suitcases that have not officially been unpacked completely in over a month.
• Nagging feeling that I am behind

I have finally done all of the laundry:

• can't find any time to fold it unless I am awake at 2am
• can't find anything because it is in a gajillion baskets all over my bedroom
• brief sense of accomplishment until I open the dryer and find more clothing that, while clean and dry... is still magically not going to be folded and put away.
• constant feeling that I am behind

Date night with Descartes on Thursdays:

• happy husband and wife who actually talked...to each other.. throughout an entire dinner about more than just who needs to go potty.
• less cash
• less time to do crappy laundry (see above)

Can I Sit With You? book number two being published this fall:

• whooo hoooo excitement and thrill of accomplishing something meaningful
• constant feeling that I am behind

Lucy is most precious bright star:

• no sleep for precocious toddlers in our family apparently because she has not been asleep before 11pm more than once in the last two weeks.
• I am worn out by 10 am each day
• have seriously contemplated nearly full time preschool/daycare so at least someone can stimulate her for 8 hours a day.
• breath-stealing guilt that I am sometimes annoyed by her smart, capable, little personage, after my oft-mentioned heartache of having a child with disabilities. 

Finally took care of myself and went to the doctor for shoulder pain:

• not only do I have a rotator cuff injury, but something is f'd up in my elbow as well.
• need to go to physical therapy 2-3 times a week for at least a month
• personal mini-crisis wondering how the hell I am supposed to be strong enough to care for my disabled child when I am only going to get older and weaker
• guilt for not going to the gym regularly so I could have avoided this injury, be in better shape and live a healthier life for me and my family.

I am now going to clean the guest room, one room, (I can do it) while Lucy is FINALLY taking a nap. 

The Nicest Thing My Parents Could Write to Me...

an email I just received upon our return from Southern California:

Dear Jennyalice

PJ & I think you are doing a wonderful job of raising Lucy. She is a very delightful and charming little girl.
We really enjoyed having her here(You too)!
love,
Momma and PJ

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

as Lucy is fond of saying "Phew. That was a close one Mom."

No More Patience

I'm not sure what has put me over the edge but I have no more patience right now. Could it be the incessant whining of my two year old? My same daughter who will not fall asleep without a tremendous struggle that lasts hours and hours. Perhaps it was a weekend with my house filled with extended family, whom I love very dearly, but when you plan for Friday night and get the whole weekend...

and the babysitter didn't show up again yesterday...miscommunication... I know I know. I am going to get new help when school starts..just two more weeks.

and Jake flipped out (episode time) last night during bath time and came up from the ground full speed and knocked me in the chin knocking my jaw into my friggin' brain. I am stiff and sore this morning from that one. Luckily I didn't get my tongue cut off.

This morning little Miss Lucy happily went to her new daycare and Jake proceeded to whine for several hours. His migraine medicine doesn't seem to be working, although he is a lot calmer now that lunch is over. Just in time for that PhD student to come over and do a verbal test on him. Fantastic!

I am going to drink a diet Rockstar and take a Wellbutrin and hope that I become civilized enough to deal with adults.

Right now it's a good thing that Jake likes to hang out by himself because I am not pleasant company.. but I am feeling just a tad bit better writing it all down.

Victories

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

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

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

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

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

I can do it.

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

"I'll Miss You Daddy"

Yup. That's what our two year old said as she hugged Daddy one last time. She packed her Princess purse (thanks a LOT Squid) with her keys (an old key attached to an old doggie collar tag, her cell phone (princess phone stolen from cousin Bubsy), a kitchen timer shaped like an ice cream cone (a "time out timer" from Monster, we keep calling it a cupcake) and a small zebra.

Lucy gave her brother a hug, sat in my lap and held me, then marched out to the car. She waved good bye from her car sear, asked Papa to "Turn engine on please." for the A/C and they left for the week. That is one independent kid.

I cried a little. A little because I will miss her. A little because my "baby" is able to be without me for a week!

and a little because she was able to tell me she loves me and tell her Daddy that he will be missed. Those last two are a few messages we don't get to hear from Jake, though I know he thinks them. I am just so thankful that Lucy can communicate all of her emotions. It seems silly perhaps, but today, again, it feels like I have witnessed something amazing.

Jake walked everyone out to the gate, and initiated goodbye to his Papa. He is getting very good at ducking into people's arms for a small cuddle. Friends and family have noticed him initiating this more and more. He build relationship in his own way with each person.

When my dad left this morning Jake walked to the door too. Now it may be that he just knows he has a chance to escape, but I think he really is becoming a part of the good bye process without needing prompting. It was so nice to have BIAD here. We went crazy at the teacher supply store buying Lucy her birthday presents (art supplies, enough for a preschool), and he got to meet a bunch of people I know, even Sage made it back from Tahoe in time to meet him. He got to see Lucy swim and drop Jake off at school, eat Amici's pizza (one of our favorites) and help me pick out a new coffee maker. He also relaxed on the couch and read a few books, which is probably exactly what he needed.

Now back to packing Jake for camp. My house is suddenly very very quiet. It is still very hot, and we saw lightning in the distance. Hoping Jake's camp remains fire-free this summer.