Chances Are

In the middle of the night, I heard my daughter cough in her sleep and jumped out of bed. She had only coughed once, but that's all it took for my heart to race and a cold sweat to break out.  I rushed to open the door and fly down the hallway to her bedside, tracking in my head where my car keys, tennis shoes, and charged cell phone were. Could I call Jake's aide to come over at nearly three in the morning? Would Descartes and I both go the hospital? Should I call my parents now and let them know, so they can make plans to fly up, or should I wait for the prognosis from the hospital staff? Will we go to Stanford, or the closer, smaller hospital? What is the name of the one drug that helps a little bit in this case? How will I live without her? I cannot imagine our lives without her. Is my daughter wearing any pajamas?

I put my hand on her stomach and her forehead and I gasped, or choked on bile, or something that made me stop all of the decision trees in my head. She didn't have a fever. Cool soft skin on her little tummy and an unfurrowed brow, peaceful and healthy, and breathing quietly. Sleeping, without pajamas, through all of my worst nightmares.

Chances are slim that we were really exposed when we stayed one night at Curry Village while Jake was at his own camp. I know that the virus is very rare, but we are still in the window where we need to keep an eye on ourselves. Once it gets to the lungs the prognosis is not good, but for the night we were all still symptom free. Nope. No hantavirus tonight.

Just try to go back to sleep after that.

And as I lay there in bed trying to will myself to rest,  I sadly realized that I am always preparing for the worst. How much of my brain, I wondered, is spent doing all of that thinking behind my everyday thoughts, like an operating system that is taking up too much memory doing background tasks that don't seem to help my speed or accuracy in other parts of my life.

Does it make me a pessimist that I expected to find her in need of emergency attention? Does it make me pragmatic? Cynical?

I am filled with hope for my family, for my children, and our future, and I fully expect that we have so many bright, bright days ahead of us, but I am always equally preparing for every single bad thing to befall us. And perhaps that's what made me sad as I failed over and over to clear my mind; I think there are equal parts expecting joy and disaster... they are equal.

What is life like for people who are not on guard all the time? And was I always this way, or is this one of the 'skills' that I have picked up because without it we would already have lost Jake to an open gate or a knife in the sink or a car door left without the child lock on?

Jake is gaining new abilities every day lately. He is happy and engaged and laughing more. And he can now twist open a door knob almost every time he tries. He can even twist the knob and pull the door towards him, step out of the way, and then slip himself through the open door. It is exciting, and knowing that he is that much closer to more independence makes me proud, relieved, and grateful that in an emergency he might be able to exit a building safely.

And, it just added a need for increased vigilance for me.

That's the crux of it. Parenting is like that, with any child. We can't wait for those little babies to crawl, and the minute they do the floor needs to be clear of Legos, and marbles, and dog food, and maybe should be cleaned, but not with harsh chemicals. Their first steps and we install gates and put away glassware, and store the marble coffee table in the garage for a few years. 

If we had experienced typical development at our house, perhaps I would have calmly proceeded from one level to the next, then relaxed as new dangers appear, and previous ones become less problematic. But that's not how it rolled out at our house. Jake has always grown in bursts of knowledge and ability. He didn't crawl until he was five or six, but his first steps at age four came not one at a time.. instead he walked across the entire living room as if he had done it every day for years. He went from needing to be lifted into the car to scampering up on his own, seemingly overnight.

I am ever hopeful that he will learn the next thing that changes his life. We work to help him gain any skill he wants to develop, but I never know if today will be the day he masters the task. There is no practicing, it always seems that a switch is clicked on, and if I am not prepared for every skill to show up, every day, the consequences are grave. So each day I am equally filled with hope, and a bit of excitement waiting to see what he will be able to do next, and I am fearful that I will not have adequately prepared his environment to keep him safe.

I wish I could just revel a bit more, and worry a bit less. I want to believe my husband when he reminds me that we were not anywhere near the tent cabins those other people stayed in. I want my children's growth to be celebrated without a new list of concerns popping up in my head.

I'm going to try to tip the scale a little bit more to the 'expect joy' side, and clean out the part of my brain that is on guard all the time. I know I won't be able to let it all go, and I wouldn't want to, but perhaps I will take the advice I always give others:

It will all be okay, or it won't. And worrying about it won't change a thing.

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. 

******

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.

Autism Acceptance: Growing Up

I heard a crunchy sound from a mouth that should have been empty. It is a horrible feeling when I think one of my children has eaten something dangerous. We've been pretty lucky around here, the most inedible items actually swallowed aren't really inedible, the cut-off tops to strawberries, nibbles of wine corks, a little raw onion, a small piece of crayon; nothing really harmful at all.

So when I heard the crunchy, chomping-on-china-plates sound, I begged Jack to spit out what was in his mouth. He laughed as I followed him around the kitchen, and tried desperately to put my finger in the side of his mouth. Just as I was wondering how much worse it was going to be when he bit off and swallowed my finger along with the glassy sounding bit, he pushed a small white object out between his lips at me, and it bounced between my fingers and clinked like porcelain onto the floor. He smiled and ran across to the living room.

It was a tooth. His tooth, of course. He's still a kid who is going to lose teeth. All at once he is both too young and too old for that, but he's 11 1/2, so he is actually right on time to lose those molars. And whether I am ready or not, many milestones occur without regard for ability or disability. He grows physically, and changes mentally by the minute these days.

He's just at that point between being a little boy and a young man. In some ways, he'll always be my baby, just like I am my Daddy's "Jennyalice, " and Momma's "BabyGirl," but I need to remember that he is growing up. It's challenging sometimes to gauge things because his known abilities are so uneven and his expressive communication requires a patience on my part that I strive for rather than come by naturally. But even if Jack is not at grade level in math, it doesn't mean that he might not have crushes on girls, or start to have other new interests. We've already recognized that he is attentive to Myth Busters, and done with Dora.

I'm trying to stop using the word "potty," and use instead, "bathroom" or "toilet." I hold myself back a little bit when he is in front of his classmates before I smother him with kisses. When the topic of moving from one classroom setting to another came up at his school, I asked him what he thought, and what classroom he thought he should be in.

As a society we often infantalize people with disabilities, especially those people who do not speak typically. People who use AAC devices aren't always given credit for all of the nuance of thinking they may have because their device 'speaks' in straightforward, quipped language. And those who do not use devices at all are often thought to have no thought at all. In the absence of a clear, articulated sentence, it is still important, or rather, imperative,  to consider Jack's opinion first in any situation that involves him, and to be respectful to ensure that, as much as possible, barring safety concerns, Jack be in charge of his body and his actions.

It would be easier to push and pull him where I want, maybe. It would be faster if I made the choices: vanilla or chocolate, green or red, apple or pear. It would be convenient to use only my desires to dictate where we go and what we do next. I'm guessing this is just part of the parenting process in some ways, when our children are young we control most of their environment, and some of that control naturally falls away with a typical child who asserts themselves with voice or physical action. With a kid like mine sometimes you have to look carefully for the cues that tell you to step aside. The longer I have this job, the more I realize that it is my goal as a parent to teach my children to make good choices on their own, and to support them so they are confident in the decisions they have made.

And as they grow older, I will encourage both of my children to give thought to what they want out of this life.  As individuals they need to consider what is the best thing for themselves, for their family, and for their community with any choice they make. It may always be harder for me to tease out what Jack thinks is important, and to discover his desires, and I recognize that he may need help executing many of his choices.. but he deserves to be heard.

When all of those little baby teeth are gone there will be a precious, possibly-pimply, fuzzy, young man standing in my kitchen, and we should all want to know what he thinks.

a version of this post was the editor's pick at OpenSalon

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.

Lead me to the Gate

We're happy around here. Vacation for the kids has begun. Descartes is taking some time off. We'll see family, and snow, and the beach, and most of our Great State as we traipse up and down in our all-wheel-drive van. If you ever buy a Toyota Sienna... pay extra for the AWD. It is so awesome to drive right up and through those chain control check points.

We had Thanksgiving at our house this year. My Tahoe family came down and Descartes' parents came across the bridge, and we had a lovely, lovely day. My sister made most of the food, or maybe she didn't, but since she brought food from Tahoe, beautiful home-made food, and then she helped me here, I think she did most of the work. Descartes' parents were precious with the kids, of course, and they had fun decorating the Turkey Lurkey cake.  This was not a tradition I had growing up, but it is a great way to entertain the kids, especially right before dinner is served when every one is antsy. In our family you frost a chocolate sheet cake (okay Descartes' mother does all of this...) and you let the children coat the entire thing in candy, with the goal that the cake look something like the Turkey it was cut out to be. It's really gross, and awesome, and sickeningly sweet. The tradition we have added with this generation is that I let the kids eat a piece of that cake for breakfast the next day. I love being that kind of bad mom.

There's lots of new lately. Mostly things look the same, and certainly to the untrained eye, to an outsider who doesn't notice the nuances of our life, nothing looks different, but there are some great things happening.

Late afternoon on Thanksgiving day, when it came time for us to say goodbye to Cookie and Papa, Jake was very upset as we shut the kitchen door, and watched them walk away. The little kids wanted to walk the grandparents to the gate, and as I said yes, it occurred to me that Jake probably wanted to go too. So I asked him, and he said, "Uh ye....ah!" So Jake went to the gate. The little guys peeled off to play before they even made it down the back steps, but Jake went to the gate and stood there until he saw his grandparent's car drive away. And as the car passed by the gate he raised his hand, a sort of mix between a salute and a wave. And when they had driven off he turned around and walked down the breezeway and back into the house.

Relationship. Social awareness. Understanding family dynamics.

We're also seeing something else that seems like no big deal to most families... Jake is beginning to lead people to where  he wants to go. He took Descartes' hand and pulled him, gently, towards the door in Tahoe because he so desperately wanted to go outside. He took Squid's daughter Iz's hand and walked her around the entire bounce house party. He took Uncle Jaster's hand and led him to the door (once again.. that boy really likes playing outside!) He took my hand just today and led me to the breakfast counter for a snack.

Communication. Intent. Calm insistence. Proprioceptive awareness.

And he's been snuggling. Really snuggling, on the couch, in the bed, and nuzzling in when we give him a hug. This month we've spent at least two rainy days snuggled on the couches in the living room, watching his favorite show MythBusters, or a movie. It might make us a lazy family, but we are trying to let Jake lead. I watched almost all of The Princess and the Frog with Jake at one end of he couch, and me at the other, or feet snuggling and twisting under the blanket. And just this weekend he took a rest with his head on a pillow between Descartes' and mine, for almost 40 minutes. He had one arm around his dad's arm and his other around my shoulders. We were closer to him, for a longer than we had been in years- years.

Affection. Preference. Increased attention span.

We have seen so many little things that amount to such big long term changes. He has been happy and healthy and present, and it has been wonderful. In this season of thanksgiving, I could not be more grateful.

We head out tomorrow to Southern California. The rain should be plentiful, and the food delicious, and seeing family will be wonderful in spite of the obstacles of changing our routine and leaving all of our comfort zones. If nothing else, our family loves a good road trip. Although there is one other thing Jake has been doing lately...bugging his little sister. Very normal brother-sister teasing: sneaking a single cookie out of her bowl when she walks away, taking her doll in the car, and laughing when she throws a fit, or tapping her arm until she gives in and shares her snack on a road trip!

Time Slows Down

Today, twice I double checked my phone for its clock... it seems that I gained extra time in this Peet's Coffee shop. That almost never happens to me. It could be that this is the first true alone time I have had in weeks. 

I worked on the book for a bit. I need to use my bigger screen at home to get the paragraph spacing right, and see the layout.. and try to get the pagination right ( and trimmed so Squid doesn't cil me.) It is exciting to work on it. I know we don't have an agent.. that there's no flashy book tour, but I feel good knowing that the proceeds all go to SEPTAR and there are kids who might read the words on those pages and feel just a little bit better, a little less alone. God willing and the creek don't rise, the book should be available mid-November.

Jake and I went to urgent care yesterday. He does not have a broken meta-tarsal, as was feared. After a few x-rays we discovered he had only chipped a little tiny bit off of a little bitty bone. Given that one quarter of all the bones in the human body are in the feet, it is not surprising that he would break something. We are having the convergence I think of a few things:

• Jake has profound disabilities. He is unable to effectively communicate when he is in danger or injured. 
• Jake does have cerebral palsy. We forget this sometimes because he is so physical, and he eats by mouth and he has no tubes or crutches, and mostly does not use a wheelchair. Most of the kids we know with CP, they are more stereotypical. 
  
• Jake is an eight year old boy. He loves to climb and jump and explore and race around and feel the dirt between his toes. 
• Jake likes being in bare feet.

I had not actually prepared for weekly urgent care/hospital visits. I did not break any bones until I was 11 I think. By his age I had chipped a tooth,  and had stitches (once), but I'm pretty sure I didn't break anything until the roller skating incident. They used to have speed skate/a race at least once during each skate night. I was pretty fast, but not that fast, and was especially not in the winner category when I tripped over my own slates and landed on my right wrist. I also broke my left wrist falling off of someone's back in a game of horse (now who the hell was I ever smaller than? Perhaps that's why I fell?), and the third break, on my right arm again was from? I have no idea. I just remember that I had a wrist brace on both arms for three days during a period of time when one was healing and the other had been fractured.

Anywhoooo. I guess I forgot that Jake would get injured from normal playing too. I read a lot. I played some sports and rode my bike, but for the most part, Jake's play life is much more physical than mine ever was. I am trying to find a balance between keeping him safe and keeping him from being bored. 

Jake's bus is coming soon. I must swill my coffee and head back home to pick him up from the bus. It's been a nice little vortex here, full of time, no children,  many business conversations going on around me. I am well caffeinated now, and thus fortified against what this afternoon may bring. Hopefully no injuries. These co-pays are killing me.

Chit Chat

Sometimes in this little Special Needs community I have become a part of, we joke that the "apple doesn't fall far from the tree." Meaning that it is not always surprising to meet the parents of a special needs kid and discover they are just as odd if not more quirky than their child.

I have noticed lately that little Lucy is a rather chatty little girl. She came out ready to go. At 2 hours old she had her eyes wide open and her mouth poised to speak. She has a LOT to say. She says it well, very well even, for a not yet 2.5 year old in big long sentences sometimes. She is remarkable, and people, friends, find it amusing to note that she "talks almost as much as her mother."

That's the other thing about these quirky kids, and more often their parents... we don't aways get social cues. This was one area that I had always thought myself rather savvy, the social cues part, but I am thinking lately that I have really, really, not heard all of the subtle and not so subtle ways people have been letting me know that I talk too much; too much, too often, over people, through people, dominating conversations and dictating when others speak. This trait I had always put on my assets side, the side with thin ankles and a college education, when it's looking more like this trait falls, apparently much more solidly on the side with thinning hair and my inability to remember people's names. I am ashamed.

I have always filled the space. Ask my sister, my dad. It's a family joke right? Actually I think I AM the family joke, and now with a bunch of people I really admire, I am starting to feel that way too.

How does it happen that something I thought was a skill, something I actually liked about myself, has become something that has gotten away from me and has ultimately turned into a flaw? Does this happen to other people? Are there things you thought you were good at that end up being something everyone else hates about you? Something you never thought of as a problem that once it comes to light makes you toss and turn?

We are loathe to label our children because we are afraid it will define them, limit them, make it so it's hard for people to look past their disability. What if they change or develop past that label? Will anyone notice, or will they look at what was decided about them years before and just prejudge them? What about when I am introduced as someone who talks "more than anyone else on the entire planet"? What chance do I have to learn new tricks there? Or will I also disappoint if I am tired and just don't feel like holding up both ends of the conversation? I used to love, love, sharing something funny that happened in my life, but I am realizing that I am so self conscious lately that I almost found myself unable to speak in front of a crowd the other night when I was on a panel. I've been speaking, or singing, in front of audiences since I was in the third grade. It's something I have done hundreds of times and enjoyed every single time without butterflies, and the last several times? well...

It's good to face your flaws. It's good to have people care enough to point them out to you. It gives you a chance to right them. Better now before I'm 40 so maybe I have a chance at the second half of my life of being a little less ego centric and little less selfish. Maybe I can ask more questions. I can hold my tongue and not share my opinion, because Lord knows I have one on every subject. I have already tried the not calling people thing; I don't need to be that phone call that people dread answering.

Although, and I'll be honest, I can have this sick feeling in my stomach and vow every night that tomorrow I will keep my mouth closed, but in the moment.. I don't know how. I don't know how to keep a story inside. I don't know how to give the short response. I don't understand how to keep the phone on the table when I want to share something. I don't know what it's like to walk past other people in the grocery store or on the street and not say hello, or chat with the checker or the person behind me in line. I've been teaching Lucy that we do not stare. I've been teaching that when we make eye contact with someone we say "Hello" or "Good morning" or "How are you?" I've been teaching her because people are going to be staring at my family a lot over her lifetime and I want her to be armed with words so she can make the situation of having a brother with special needs less awkward.. for herself, for others.

Lately I'm feeling like it's just one more thing I am doing wrong in the parenting department because clearly it's not working out for me to have learned to be a "Chatty Kathy".

A is for Apple

Jake ate an apple. Really. All by himself. Not chopped up, not pre-speared on a fork. He ate an apple.  He ate the apple pictured below on the right. 

  

Bite by bite he picked up the apple, took a nibble then set it down on the counter. Then he picked it up again, chose the next bite and took that one too. I started to cry. 

I told him I was really proud of him. Lucy, not really understanding the great accomplishment, but loathe to miss an opportunity to be a part of a good time, ran up and said "Good job. Jake loves apples!" 

Jake has never been able to do this before. Well, if we did let him have his own apple he would eat indiscriminately, core, stem, seeds, whichever. This time I watched him choose the next bite. 

Sorry to be obsessing over this seemingly small task but add it to this little list:

• new skill: Jake can pull the covers over himself as he lies in bed. 
  
• After grabbing the hair of a little girl on the play structure on Thursday (as she raced by him). I said "Jake! LET GO!" and he unclenched his fist, her shiny hair then slid past his palm and it looked more like the hello he was trying for and less like an attack.
• new skill: After being unbuckled, Jake walks off the bus without assistance and grabs my hand at the door.
• Jake tried to tickle his sister tonight after she tickled him. He touched her stomach, instead of a random grab for whatever part he could find. 
• Jake sat and listened to the entire story "The Giving Tree" when I just read it to him tonight.

It has been a pretty rough month...maybe even six weeks. Colds and migraines and general fussiness, and now, once again it feels like we have some small but significant gains in the aftermath. 

I will need to remind myself the next time I am in those dark hours, that this light feels so very good.

Time flies...

when you are having as much fun as we've been having. We went to Tahoe last Wednesday night and I am so glad we left for the holiday weekend early. I had Jake's aide at the house keeping the kids busy while we packed the car, Descartes still worked a full day and it only took us 4 hours to get there so we still had an evening with grown ups once we got there.

We went to the beach on the third. Baldwin beach, where we baptized little Lucy (that seems like a hundred years ago...). It was so great to have Jake be happy, happy and comfortable in/near the water and in the sand (since sorting earth has been a recent favorite past time of his). He waded into the lake, smiled a lot and didn't steal any toys from small children (once we gave him his own shovel). Lucy was very excited, and I am proud to say that as much as she really likes her Sugar Plum Fairy ballet costume, she was even more eager to chase the minnows in the lakeside stream. "It tickles!" she exclaimed loudly enough for the minnow to swim away.

It is a personal goal of mine to raise a daughter who is just as comfortable in hiking boots as she is in high heels. I am also hoping she can easily tie a tippet to the leader, tie a bow tie and tie an apron. Somehow right? She can choose who she wants to be, but I want her to learn all the parts so she can know what she is and isn't choosing. Does that make sense? Anywhoo. I was thrilled then when the a couple of days later, Lucy stood there in a little dress calling for me to check out the biggest ant she'd ever seen. That's my girl. No Lucy leave the ant alone he doesn't need to be on your finger...

It was tiring at the beach, the sun, the altitude, ensuring that one of us was with each kid at all times. They can't really be managed by one person right now. Not with water and parking lots and other families. Descartes was able to give Jake some physical space and let him get about 3 yards away. I let him get to about 5 yards at one point. It's hard to give him the space and independence he so desires without putting us too far back should he need us, quickly as he sometimes does. We're trying, and I know he had a really good time. Of course we should have left 5 minutes earlier, which would have been just a few minutes after I said to Descartes, "We should go, it's probably about time for Jake to poop, and I don't want to deal with the swim diaper." Ah. If I could only listen sometimes...perhaps that will be a gift I receive in my 40s. That part of the day sucked with a capital SUCK, but I carry wipes and nitrile gloves and baggies and extra pull ups and clothes and a loving husband who is willing to grab any one of those things, or hold a struggling kid even when I use my highly-directive voice. It worked out just fine.

We went for a bike ride on the Fourth of July. It was pretty much a perfect day. We moved much faster than vehicular traffic that's for darn sure, and the kids had a giggly, napping sort of time. We rented trailers and bikes because we had been too tired to bring our own, but, as it turns out our bike trailer for Jake is actually a lot taller, longer and perfect for him. His head stuck out the rented trailer so he had no sun shade, and with a flick of his foot his toes could just reach Descartes' back tire. Let me tell you how (not) awesome it is to watch your hypotonic child throw his foot over the edge of the bike trailer, have his gigantor size 4 shoe get caught under the bar and have his ankle roll around until his foot popped back out. I was riding behind the boys, with Lucy in my trailer, and I was fairly certain that not only was I going to watch my son's foot fly off, but I was possibly going to run it over, thereby making my life truly a horror story. With fairly constant "reminders" Jake stayed inside the trailer doing wacky things like nearly lying on his back with his feet at the top,tapping his feet on the bar that attaches the trailer to the bike, and occasionally flipping his $60.00 shoes off. The good news is that the ice cream at Camp Rich was cheap. $2.50 for a huge HUGE kid's scoop, and that pretty made much made us forget that it was really scary. We will probably do it again.

Saturday we went to the South Lake Tahoe rec center park which is all gated-in HURRAH! I am so happy that people have figured out that parents feel safe when their kids can't run into the parking lot. It has a terrific play structure and swings and a volleyball court, and picnic tables. Lucy went on the big kid swing for the first time; all by herself with no back-up. I teared-up of course. She never really was a baby, but she is just catapulting past the milestones.

Jake spent a lot of time watching everything, sifting through the bark and sand. It is so hard sometimes to help him engage. I took him up on the play structure (something he does on his own at school)but he got panicky before I could help him on the slide. Perhaps he does have some depth perception issues? He did sit really happily cuddled against me on a park bench for a while. That was crazy. It is so uncommon for Jake to sit and cuddle that Jaster and Demanda stayed back, afraid to interrupt the mood. It made me feel very close to him at just the right moment. I have been missing him lately, all the while spending more time than I normally do with him. How is it possible for me to understand him so intimately, guess so many of his needs, and feel so distant from him.
note to self: I need to make a list of the things I know make Jake happy, things we can do together since it is all too easy to let him go off on his own, scattering pebbles and sifting the bark out of my flower beds.

We had such a nice weekend it was hard to leave, but managed to get it together and head home early Saturday evening. Once again we skipped most of the traffic. Lucy was so tired she whined a lot of the way. Jake just smirked in her direction.

"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.

So I got a Leetle sucked in...

when I recently ran across this article Young HA, et al, Thimerosal exposure in infants and neurodevelopmental disorders: An assessment of computerized medical
records in the Vaccine Safety Datalink, J Neurol Sci (2008), doi:10.1016/j.jns.2008.04.002

I am not one to flutter about (HA!) having the life sucked out of me by the Internets

okay Yes I am, but I really started to read this study and I thought KRAP..maybe that damn thimerosal is the culprit (knowing full well that Jake had no thimerosal in his vaccines...) It's published by the Journal of Neurological Sciences it really seems legit, but it kept saying funny things (a direct quote follows):

"For example, 37% of autism cases in the study were diagnosed
after 5 years old with about 50% diagnosed after
4.5 years old. This is a conservative estimate since it includes
the 2 years (1995–1996) that had shorter follow-up times.
Examination of the distribution of age of diagnosis by birth
year for autism revealed that only about 15% of cases were
diagnosed after 5 years of age in the 1995 birth cohortwhile the
1996 cohort had no cases diagnosed after 5 years of age and
only 3.5% of cases diagnosed between 4.5 and 5 years of age.
Based on the average age at diagnosis for all cohorts, the 1995
count of autism cases was increased by 45 cases with the assumption
that all of these would have been added in the 5 year+
age group (bringing this percentage close to the overall average
of 37%diagnosed after 5 years of age). The same was done for
1996, but the number of cases was augmented by 80 because it
was assumed that these would be diagnosed in the 4.5 to 5 and
5+ groups essentially bringing the percentage diagnosed after
age 4.5 close to the overall average of 50% diagnosed after
4.5 years of age. The newaugmented frequency counts of cases
in 1995 and 1996 birth cohorts were then used as the new case
counts in the analysis."

I am pretty sure if you re-read that a few times it seems like they ADDED autism diagnosis where there were none. They added them because in other years there were more? Because it seemed like there should have been more? Isn't that not exactly examining the data? Isn't that actually making up the data? I went poking around the Internet and discovered that I was not the only person to think it was a leetle bit off.. a much better explanation of all of the faults can be found over at Epi Wonk . Thank you Epi Wonk for being so smrt
(If you rad through responses to her post you'll also find some of the best crazy comments by John Best who is a very angry man who I will not bother to link to.)

Anywhoo I know this has been out for about a month but as usual I am slow to respond. BTW it also seems like half of the references in the "study" reference one Geier or another. Isn't that a little bit suspect as well?

okay all done...

Lucy dislocated her elbow today threatening to throw off our entire "escape from Deadwood" plan... I thought she cracked her wrist the way she was holding it. I was holding her hand when she decided she did not want to go get her special needs brother from the short bus (we need to drive down the hill to pick him up) She dropped to the floor and twisted at the same time. I heard a horrible sound. What I heard was her little bone slipping out from between her other two little bones. Yechh. She cried. I cried. I made an appointment to go to the urgent care where the doc promptly shoved her little elbow back together (making me feel a little like an idget since my dad and I had JUST talked about this happening to me 6 hours prior). It is called nursemaid's elbow. I called it milkmaid elbow in a Tweet earlier but I have now figured it out.
So she is fine now and Jake is sleeping soundly, and it is only 85 degrees outside at 12:20am and I only need to pack Lucy and Jake by tomorrow am. No big whoop.

I think I shall go to bed.

Regret

I haven't been posting much lately. Twitter has been fun (see right hand bar below) but in general I think I have been very down on myself about how I am helping Jake.. or rather not helping Jake become the little boy we think he can be.

I am constantly tortured by how annoyed I get. How I lose my patience. How I must hire someone to do tasks with him that make me sad and frustrate me and keep me from caring for the rest of my family. I watch other women with their kids, all the things they do to help their kids grow, and I feel a constant, ever constant feeling that I am not doing enough. That I am in fact not doing anything but waiting for time to pass. My feeling of regret for time lost, for therapies untried, looms over me until I can barely breathe, let alone write down what I am feeling.

I am so ashamed that even this outlet can't hold it all. I have the very best of friends and I can't even bring it up because I am so scared they will actually say out loud how disappointed in me they must be. I guess it's time for therapy.

or at least time for me to read Dear Abbey... who I variably read or don't read since I rarely get to a newspaper lately, but this morning I glanced at her Q&A and saw a line that I will keep in my back pocket "regret is the cancer of life".

Is there chemo available?

little butterfly

You can't tell that there's crayon on this butterfly, but there is. It is purple stripey.

Lucy drew on a big piece of paper. I didn't have any scissors for her, but after she was done coloring she came over to me in the kitchen where I was cooking and said,

"Here mommy. Here's a budderfly for you."

Perhaps I am easily pleased, but I am thinking that was a pretty good looking butterfly to tear out of an 11x14 piece of paper!

Is It Friday? Well it Must be Since Jake's Talking!

I just got a call from Janice, Jake's amazing teacher. Happy Friday!

This morning on the playground during A-PE (adaptive phys-ed)

Anna: "Jake look, there's the circle. There's the square. There's the triangle."
Jake: "Triángulo"

for those of you who do not speak Spanish, that's triangle. What's even funnier is that Anna was speaking English to Jake but his echolalia was in Spanish...so does that still count or is that spontaneous language?

______________________________________________

and later today

The class went to get ice cream because it is hot today in Deadwood City. When they got back to the classroom, Jake ate all of his ice cream up lickety-split (no surprise there).

And then he ate the rest of Anna's ice cream too.

Anna: "Jake, your ice cream is all gone."
Jake: "NO."

Janice: "Jake, would you like some of my ice cream?"
Jake: beginning calmly and ending with high-pitched happiness, "yeAH!"

a few minutes later...
Anna: "Jake, you should say 'Thank you' to Ms. Janice for giving you some of her ice cream."
Jake: beginning slightly muffled then ending clearly..."Thank YOU!



parenting note: to encourage open communication with Jake I must
a) learn Spanish
and
b) carry ice cream on my person at all time.

Yay for Swimming!

post swimming lesson this morning:

Momma: "Lucy, do you like swimming?."

Lucy: "No."

my face clouds with despair

Lucy: "I WUV swimming!"


Hooray! Hooray!

Webkinz

are something I knew very little about because I have a special needs kid who has never asked for one.

We are watching some weeish ones who are not technically ours (though we love them like our own) Ages Newly-7 and 4 they are precious and inquisitive and being on their best behavior so they can get a new webkins ...oh I have just been corrected by the newly seven year old ... "It's WebkinZZZZS with a z!"


oh joy.. we are off to pizza or Mexican or Chinese or Indian or something not cooked in my kitchen!

Apparently I am a Grown Up

So last night as we drove to Tahoe with way too little sleep under my belt, I was trying to find ways to keep my mind active while I navigated the car through the Bay Area and on through Sacramento while Descartes dozed until it was his turn to wind up the mountains.

I decided to go through each major high school dance in my head; Homecoming, Winter Formal, Sadie Hawkins, Prom Spring Fling, anything I could remember. I tried very hard to remember my dress, my shoes, my hair, my corsage, my date, who we went with and where the event was held.

It was pretty funny to recall... Freshman year, Homecoming Dance: Red two piece strapless yarn-dyed tafetta with peplum, dyed-to match very low heels (last time I did that!), long (past my shoulders) blond wavy hair with bangs like this (almost exactly, Renee and I could have been sisters!), corsage two baby red roses with baby's breath, my date TOM TYLER! I am pretty sure we went with Nikki E. and Jill G and their dates (who I can't remember). I think we ate at a surf and turf, and someone (not my date) ordered the Phillet Mihg Non (Filet Mignon).

I get through most of the dances and dresses, and nearly all of the dates (except the senior who asked me to prom my freshman year..he was a nice guy, a swimmer I think with beautiful surfer blonde red hair). I figure out halfway through my reminiscing that I went to every major dance, and most of the other ones; perhaps another way to know that I haver always had a nice little life.

Today I received an email from Gloria, my mom. It is a forward from the neighbor family I grew up next to. The older-sister's daughter was the flower girl in my wedding nearly ten years ago. The pictures attached to the email? They are from my flower girl's first high school formal. Whoomph. Wow. Okay. I was JUST there wasn't I? Apparently not.

At least I still have the faculty of recall eh?

Babies in The House

We have a full house! My sister Demanda came into town on Thursday wih her two boys, and Jaster, her husband just arrived yesterday.

There are babies everywhere..or more accurately toddlers (her boys have just turned one)..and Jake has not stepped on a single one.

Jake has been very happy to play on the front deck since it hadn't been raining. of course now the rain is back and along with it very cold weather. I still let him play on the deck today while it was sprinkling. He came in on his own when it was raining too hard. He came in and when I asked him if he wanted some warm cozy clothes He stopped in his tracks and stood net to me. He let me help him out of wet sticky clothes that were hard to get off his body, and was extremely compliant in getting two layers of shirts on along with sweats and socks.

It seem like he is following directions better these days.

examples, last Sunday, his Oma, Cookie, went downstairs to say hi to him while he was playing in his room. She headed back upo the stairs and called behind her, "Jake,come upstairs and say hi to Papa when you're ready." He marched right upthe stairs behind her and went over to the couch and pounced on Papa.

twice in the last week: me "Jake if you want more to drink you will need to bring me your cup." and the cup is then off of the floorin the hallway and back on his little counter where he eats his breakast.

Little Lucy, Big Bed

We went to IKEA today. CA-RAY-ZEEEEEEEEEEEE!

We ate lunch there, which generally works very well for us.. but I forgot that on Saturdays there's "jazz" band in the foyer (which goes echoing up into the second floor glass ceiling area bouncing around and around!) oh yeah then there was a screaming little girl, AND a kid who opened the emergency exit door.. 'Cause there is nothing like all of those noises to make for a relaxing lunch.

Anywhooo, we survived and Little Lucy picked out her own bed. We skipped the toddler bed and went straight to a twin bed. Yikes! We actually went to a loft bed. It's white and pine and looks like an IKEA bed but ya' know what she LOVES it! We put it together in less than 2 hours! And tonight when we put Lucy in bed she just crawled on up to the pillow, put her little head down and waited for us to cover her up. She has not resurfaced yet. She was so happy.

I, on the other hand, had tears slipping down my face as we undid the crib.. ooops they are at the corners of my eyes again! My little baby...grown up already?!

On the way to IKEA Descartes and I had a conversation about storing the crib. Storing the crib?
Huh? Why do we need to store the crib if we aren't having any more kids?

Hmmmm? Hmmmmm? I wonder?

Aside from the Dragging Foot and the MRI

On Tuesday at school, Janet, Jake's teacher decided that instead of Pierre waiting for all of the other children to get settled in on the bus, he, for once, would be able to get on first.

Pierre is in a wheelchair. Wheelchairs always go last. Pierre always waits, patiently and with a smile, but Janet decided that maybe the other kids could wait just a couple of times a week so Pierre could be first to load on to the bus.

You cannot load walking kids at the same time the wheelchair bay is open.. it is a four foot drop if someone makes a break for that back door, and besides, the wheelchair responsibilities occupy all of the bus driver's attention for those few moments.

After explaining to the class that Pierre was going to go first and that they would all wait for their friend, Anna tried to get a head start and put Jake on the bus anyway while Pierre was getting loaded on. She was going to just buckle him in to save some time I suppose.

Anna walked Jake to the door of the bus. He took a step forward, then turned around,

looked Anna in the eyes

and said,

"No. Wait."

He refused to get on the bus until Pierre was strapped in.