I Don't Hate Autism, I Hate Migraines.

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

myGirl at 7

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

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

*** 

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

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

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

myBoy at 7

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

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

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

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

***

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

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

I don't hate autism. I hate migraines.

Remember Me

I just retold a story to a friend about a life-changing incident that happened to me when I was five years old. It is so vivid: my little blonde curly-headed self standing there in the driveway next to my blue bike with the pink flowered banana seat. We didn't have helmets then, and I had already shed my training wheels. It was a sunny afternoon, like almost any other afternoon in Southern California, but that one conversation shaped part of who I am permanently. It is something I think about almost every single day, sometimes multiple times in a day.

One conversation when I was that young and those words, and what I did, those words inform my character and actions every day. I am 40 now, with a lifetime of education, and conversation and yet ten minutes, 35 years ago changed me, and for the better. I could have learned the lesson another way, farther down the road, but it made life easier for me having that knowledge early-on. And I am so grateful.

I won't tell the whole story because I know who reads this blog, or might read this blog, and telling the story out loud, here, would change it, and it would read the wrong way, and sound self-aggrandizing, but there is something that struck me as I shared the story privately.

What will my children remember?

I realized that I can remember so many details about what happened, and what was said. I remember being flush with shame, and wanting to take back what I had done, even if no harm had come of it. And I got a good look at how a face crumples when someone is disappointed in me. Then I realized that my daughter is almost 6, and if I can remember being that age, she will too. And my son, well, he's eleven and a half, so it's pretty clear that when he writes his memoirs I am in trouble.

The words I say, my actions, my goals, and the way I celebrate or despair, my kids are watching all of it. What imprint am I making? Am I giving them the right lessons to lean upon when they're 40?  And what am I leaving behind after talking with friends over coffee? What do they recall later, after we have waved "goodbye" in the parking lot?

Luckily there is tomorrow, and probably many days after that to get this parenting thing, or some part of this thing right.  I will mess up.  I will be short-tempered, or hurry when we should have enjoyed the journey. I will never get it all mastered, but tomorrow I am going to do my best to make sure that whatever my children might recall of these years, some of it will be worth remembering.

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

Not Running Away, Just Running

My back hurts. A lot. And my makeup is smeared and my ankle hurts, and my wrist is a little twisted. I am sort of a wreck, but I would chop off a toe with a dull blade if that was also necessary to keep my son safe; a little injury is worth it.. it's always worth it. I will feel better in a few hours, after the adrenaline surge dies down and the kink in my back is ironed out with an anti-inflammatory.

Jake ran away from me in a busy parking lot 20 minutes ago and despite that diagnosis of cerebral palsy ataxia, he moved so quickly that the only way to get him back was to leap and tackle him.. on the asphalt, in the middle of a moving car line at the pick-up where his sister had camp today.

I got a hold of him, straightened myself up and walked on the  campus, my hand firmly around his forearm, no longer bothering with his hand at all. A very kind counselor who could not possibly have been more that 18 noticed me, and must have known that something was up by my demeanor. When she asked if I had a question, I broke into tears and said "My son just escaped my grasp in the parking lot and got away from me. He's fine, but I need to get it together before my daughter sees me." She graciously said, "Why don't I go get her for you and you can take a minute."

Jake and I sat there on the edge of the little playground, me firmly holding a twisted knot of the back of his shirt, his hands sifting through the tan bark. I wiped my tears, assessed my physical damage, pledged not to be angry with my son, and took a deep breath.

Lucy bounded out with the sweet counselor who brushed away any of my apologies as completely unnecessary, and as we left, Lucy said, "Mom, I want to play on the play structure." and headed two feet away from me. I reminded her that she was headed to a birthday party and she happily came next to me and we all got into the car.

Then I had this flash, not of how frustrated I am, or irritated, or disappointed that such a simple errand could not be completed without major incident.. but a flash of how my son must be having all of those feelings and more. When he "ran away," he probably just wanted to play in the tanbark at the edge of the parking lot. Sitting right near our car was a little slice of what my son must think is paradise. That big fresh pile of tanbark just waiting to be spread abut the flower beds at this beautiful elementary school campus, siren calling him, and he probably just wanted to put his little man-hands through every piece of it.

He wasn't necessarily running away, he could have just been running. And how could I possibly know  the difference?

Can you imagine having all of the desire to do something as simple as putting your hands in tan bark, and being unable to do it because you just couldn't tell anyone that's what you wanted to do? Lucy asked to play on the play structure, turned away from me, and I certainly didn't lunge after her.

But, of course, she came back to me. And I know that she would do the same thing in a parking lot, or an airport, or Disneyland. She comes back to me, and before she leaves, she looks both ways to make sure she will be safe. I can count on that. I taught her, and now she knows it, and that's the end of that, and anything other than that is her being naughty, but even at her naughtiest she is always safe.

I remember having a discussion with one of Jake's teachers when he was at his previous school where they had proudly put "I want to go to the bathroom." push-talkers near the door frames of both exits of the classroom, so the children could press the button on their way out the door. I thought it was a great idea, except for the part where Jake is not allowed to get up out of his seat during work time. How could he ever communicate a desire to go to the bathroom if the icon is across the room? How humiliating, how degrading.

Does he live his life with the hope that I will be there to intuit his needs? That his next caretaker during the day will be able to understand his subtle facial expressions and vocalizations. Here I was, so worried about Jake being injured this afternoon, but I'm not sure that it isn't perhaps more painful for him living every day, just hoping the people around him will take a moment longer try to understand what he wants, where he wants to be.

I am crushed to think of how many times I have been impatient with him, wishing he would just do one single thing I asked him to do, when he is probably wondering if today will be the one day that he gets to choose to play on the play structure, linger. But I can't let go of his arm; I just don't know that what we have tried to teach has stuck in there.

And how will my son ever prove to me that he will come back if I can never trust him enough to let him leave?

****

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

He Handed Me a Tomato.

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

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

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

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

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

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

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

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

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

****

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

Label Me Capable

At the time my son was almost three we realized that without a label, without an official diagnosis, it would be nearly impossible for him to get services from the county or state. It is required so they can check the correct boxes, which allows everyone to take money out of the right vat with the right dipper. It's a pain in the ass, by the way, more difficult than finding childcare or signing your kid up for summer camp. Getting someone, anyone, to write down, definitively, what is wrong with your child is a serious lesson in patience, persistence and the power of language.

No one wants to be the first person to label your child. We begged to get "cerebral palsy, ataxia" to describe Jake's odd way of hipping and hopping and stumbling around. No one worried about anything behavioral at that point, mostly because the check box for MR (which is the nice way of saying mentally retarded) had already been checked. But just a plain old MR won't get you much. It's better to add a little HI (hearing impairment), or better yet there's number 5 which is vision impairment. We don't have checks in those boxes, but we do have most of the other ones; developmental delay, speech/language impairment, multiple disabilities. Truthfully the best one I've found so far is OI, orthopedic impairment. If you get that box checked, the money comes out of some other pocket called the "low incidence fund", and people stop caring how much your child's little switches and talking buttons cost because the school district doesn't pay for them directly, it comes out at a different level in the budget. When we started this game with his first IEP in 2003, the box for Autism wasn't even on the paper.

When Jake did  receive the autism label, a year later, written down on the letterhead from the pediatric psychiatry department from a prestigious university, I called the office back to make sure that they knew they had put my son in the "autism" category of the study. The poor PI stuttered a bit and asked if anyone had ever talked to me about the fact that my son was autistic. I jumped in and said, "Oh, don't worry, we're thrilled!" She let me know that I was the first person she had ever spoken to that had used the word "thrilled" after an autism diagnosis.

But I really was, because there is a power in naming things. We can box it up emotionally. We can explain it. Do you know how much easier it is for my son's grandparents to say that their grandson has "autism"? The first three years were spent mumbling a lot of, well he's "behind a little" and he has "low tone", well, actually he's "behind a lot", and he "isn't talking", but he has a "great appetite", and he's such a "beautiful boy" blah blah. Thank God we got that one little word.

I get why labels could be a bad thing, how they might hold you back, or allow other people to peg emotions or expectations on you based on what you've been called; bright, disappointment, overachiever, does-not-apply-herself, genius, chattycathy, princess, precious, trouble, smart ass, smart mouth, back-talking, ungrateful, messy, funny, beautiful, too-big-for-her-britches, too big to wear that, too smart to do that, responsible, mature for her age, growing up too fast, capable, little girl who can do anything she wants if she just tries hard enough.

I've been labeled since I was born. I am the first born. That was probably my first designation, then, the "oldest", but like most labels, it doesn't quite fit anymore. I have older step-sisters now, and older sisters-in-law, and in my group of friends I am variably the youngest, or the middlest, but very rarely the oldest.

Towards the end of high school, and through my first years away at university, my parents, the side that has not one, but two psychologists, had a chart on the pantry door. It was a barometer of sorts with each of the four children's names able to move up and down depending on where we were currently "being appreciated" in the family. At the top were words like "genius" and "precious" and perhaps "our pride and joy." Then there were probably words like "good job", and "still gets a key to the house." Towards the bottom were phrases like, "willing to sell to highest bidder", and "a curse upon our house" and other terrible things you should never say about your children, or the family pets, who also, somehow had their names on the door as well. It was very distressing when the rabbit who pooped in the living room was higher up on that chart than my name.

I'm not sure how we got moved around. There were points involved, sort of, but once when I asked how many points there were in total (so as to determine whether losing 1000 points was worth it to do what I wanted to do), there was no definitive answer, so I know that wasn't all of it. The kids, we moved each other's names around a lot. My sister, Demanda, was almost always "precious" given her proclivity to near-death experiences, and grave illness. Though to be honest, she still gets "precious" most of the time. Looking back at some of my actions during college, I'm surprised I got to stay on the chart at all. My younger brother was generally a good kid, except for the Christmas when he asked for all of the receipts, so he could exchange the gifts we got him for something he "actually wanted." I don't think "wienie" was on the chart, but it would have fit. "Genius" was a good label to have, at least in my book, and my youngest brother and I have fought over that one for years. (My parents think it's funny to tell each of us that they know our IQs but won't share them with us. I think they tell each of us, privately, that ours is the highest, so we can feel superior to our siblings, and they can have something to giggle about.)

When I talk about "the chart" now, as an adult, most people look a little bit horrified. And I suppose that labeling us, constantly, was perhaps a little bit mean?, but also so honest and encouraging. I am capable. I can do anything I set my mind to do. After all these years, I think that's my label. So I suppose I'm a bit of a superhero. I can do anything. Is that such a bad thing?

I always knew exactly where I stood in my family. I know I was loved, by all of my parents; no matter what they called me, I have always felt loved. And there is that whole "power in naming things", or at least calling us out for our deeds, good or bad. If everyone, at the same time, knew that my parents were disappointed in me, maybe that helped one of my younger siblings avoid whatever quagmire I had slogged through. And being praised by your parents, in view of your siblings? Well, that felt great, but it never lasted long, because it would only be a few minutes before your name would slide down and the damn rabbit would hop to the top. I think we each tried hard to be towards the top of that chart, not because it would earn us more love, but because that's one of the ways our parents pushed us, in school and in life, and in relationships. Those labels were worth aiming for.

I understand when a label can stop you from growing, or allow someone to have a lower expectation of you. When someone called my son "mentally retarded" instead of "developmentally delayed",  I had a visceral response, because, to me, one label is finite, and the other holds optimism. But I know it is ridiculous for me to let those few words hold so much power over my emotions.

Labels help us identify each other, and if we are smart, we recognize that labels are really only for the person who is using them, so they can know how to interact with us. I can't really change what label someone puts on me, or my son, I can only change my behavior. It really shouldn't matter at all what words someone else needs to describe me or my kid. What will always be most important is that he gets what he needs, and whatever box we need to check, we will.

But you know he'll always get what he needs, right? Because I'm his mom, and I can do anything, as long as I set my mind to it--at least that's what my parents told me.

*****

A version of this post was featured in the Life section of Salon.com

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".

American Dad?

Has anyone ever watched the show American Dad? Something about a CIA agent and his family..and the alien that lives with them. The alien is named Roger? Okay I admit I don't know much about the show, but there was a rerun on tonight that somehow ended up being watched by my husband (who knows he may watch it more often than I know...) but tonight I overheard some of the lines of the show...and we both cracked up because the alien, Roger...

it was literally killing him to be nice.

You see.. I am not nice and I am not cute. I know these things about myself. I'm okay with it. I have tried being both, or one at various times in my life. For a few moments I might pass off either characteristic, but the truth is, I think it would really kill me if I had to be nice.

I think I am a decent person who does the right thing nearly all of the time, at least I try to. (I give blood, volunteer at the library and take stray dogs back to their owners). I also think I 'clean up good', that perhaps I have a more 'classic' look about me (think big ol' Renaissance art figures?!) but "cute" is just never a word that someone would use to describe me.

and nice? Yeah. Nope.

Get Me A Gun

If one more f*cking person asks me what I think of Jenny McCarthy I am going to kill someone, possibly myself.

Okay that is extreme.

I am still growing and learning, as we all are, and I believe each family has their own journey.... as long as your journey doesn't hurt me (or your child), you can travel whatever road you want, and I will do my best to support you. So here is kind of what I think about a few things.. and I am so fired up right now listening to Larry King Live that I may throw up.

• I believe that Jenny McCarthy saying her son has been "cured" is lame. I think we learn to live with autism, you provide your child with every opportunity to engage in the world and offer as many different ways to communicate as possible so the child can be heard. But fine, her kid is healed, or cured..not going to happen for every child with autism...not going to happen...so re-frame it Jenny...like "here is my personal story of hope that will probably not work for you, but buy my book and you can buy a piece of that hope." [To be fair, she does appear to have some sense that not all children will respond as her child did.]
  
• I do not believe that vaccines cause autism. Jake didn't have thimerosal in his vaccines, most of the kids born after 2000 didn't either, so all of the new diagnosis? Maybe vaccines trigger autism in kids with a genetic predisposition? Maybe. We do know that measles, mumps and rubella can kill children, as can polio.
  
• I do not think that every child with autism benefits from a Gluten Free Casein Free diet (GFCF). I do think that some children may benefit from diet change. Almost any child on the planet eating a healthy, preservative-free diet, carefully monitored by an adult who ensures that all dietary needs are being met.. most kids are going to be more focused, healthier and have better bowel movements. Paying attention to your child's diet is a good idea. Being righteous because you can bake bread with rice flour is not cool.
  
• I think that actors/porno stars/whatever/entertainers are not scientists, doctors, or researchers...anecdotal evidence does not mean a cure. Ugh. I also do not believe that doctors are Gods or always right.. so there.
  
• I do think that people correlate all sorts of things (good and bad) that should not be correlated : In the U.S. most people in car accidents have had french fries within two weeks of the accident. French fries cause car accidents. Also most people who win the California Lottery have been in a liquor store within one week of winning the lottery, possibly purchasing alcohol. Drinking can therefore help you win the lottery.
• My child is never going to have Hyperbaric Oxygen therapy...unless he has the bends.
• Any doctor Board Certified, DAN! TACA, Holistic, or working unlawfully and without credentials who tells you that they can cure autism, and all allergies, and ADD, and ADHD, and bad breath, and sleep disorders and corns and eczema with their wonder pill/magic formula is full of crap. However, if you want to take your kid to someone who believes that they can cure your child...go for it... unless you are harming your child, I support you in your effort.
• NAET® is crap crap crap "NAET clears an allergy by rebalancing your body's energy when you are in contact with the energy of the offending substance." and my favorite "If you are unable to be tested yourself because you are a child, pregnant, disabled, or too weak, you will be tested through a surrogate. " Allergy testing by proxy? CRAP CRAP CRAP.
  

okay I am tired.. I think a lot of other things too.

I do know that I have lost relationship with a person who is very, very important to me because we did not try NAET. She thought that I was not doing every single thing possible to "cure my child."

I wasn't willing to throw money away holding vials of wheat flour and water in my hand while a chiropractor gave me some acupressure...maybe that does make me a bad mother.

I already knew that.

Actually, Plumbing IS hard.

I have a new dishwasher. I have a new refrigerator. Lucy does not have MRSA on her finger, it is only strep. Jake does not have strep, he only has a sinus infection. I do not have strep. Descartes did not even have a doctor's appointment. My life should be pretty much perfect.

Except Jake had diarrhea at school and I had to pick him up and wait, have I told you about the diarrhea thing? This one really has worked for me. I look at whatever situation is going on in my family.... and I say, "Well, does anyone have diarrhea?" and if that answer is no...then I know right then and there that it is not that bad..because apparently it could be worse because everything is worse with diarrhea don't you think? Now sometimes this does not work because the problem IS diarrhea..but you get my point.

So anywhooo I decided to fix the water at the kitchen sink issue we have had as of late.. for some crazy reason (the last plumber) the cold is hot and the hot is cold. So I went under the sink with a wrench (or seven) and fumbled around trying to fix it and discovered that, indeed I do have arthritis bad enough to not be able to do that.... and also, while I am rather handy, I am also a bit clumsy.

I dropped a giant wrench on the bridge of my nose. Same place where Jake broke it several years ago. I sat up from under the counter (actually without hitting my head on the way out), and sat there and sobbed on my kitchen floor.

"Why God, does everything have to be so hard all the time?"

and then it hit me.

Plumbing is hard. This is why there are plumbers who make good money, and why even very smart people hire them.

but more than that. I think somewhere along the line I think I had started to believe that because on most days, life with Jake is so very hard, that somehow the rest of my life should be easier.

The fact of the matter is:

the rest of the hard things in life might be just as hard for me as they are for other people, I just also have Jake.

and now you are thinking this chick is so dumb.

But really. I think I go around thinking that I know I can't solve Jake, fix him or any such thing; I am trying not to waste any more time on the 'why' of Jake. He is a mystery that I love and am trying to help him be an active part of his world.

...but every other thing on the planet? I should be able to fix those things because they all have answers. Everything else has a rational explanation, so it should be easy for me to fix or do every other challenging thing I encounter. I am smart enough. I have resource enough. I should be able to do it.. and it should be easy for me to do because there is an answer, in a book, on the web, in my head, from a friend...all solvable.

How crazy is that? No wonder I am so irritated with myself all the time.

A Question of the Heart

Recently I had the nicest out-of-the-blue email from a school chum I have known since the first day of first grade. We were mostly close friends all through school, only drifting apart due to differing focuses (she on school, me on singing and boys and working). She is one of those people who is brilliant, so smart she just sort of 'hums'. She is a good person, with a gentle spirit. She is one of those intelligent people who doesn't need to make other people feel stupid. A quality I am sure she has honed as an adult. She is a natural teacher; so many things come easily for her, but instead of being frustrated by others' lack of knowledge, she has the patience and ability to teach others and help them see what she can see. Obviously, a girl and woman I have always admired.

Well, as it turned out, she thought I was okay too. A mutual-admiration society of sorts. She said she thought I was nice all through school, when other girls turned caddy she says I didn't, and she had these very strong memories of me being a kind person, and even defending her when other girls were speaking harshly behind her back (while she was pretending to be asleep at a slumber party).

It was truly a remarkable email for me to receive, because I do not do a very good job of remembering anything good I ever do. When asked recently if I hold a grudge I replied no.. My husband said, "Well, but you do remember every single thing anyone ever says". and I think that is true. But I don't hold a grudge, instead I just remember every mean or unkind, or misplaced word which has ever been spoken to me; every criticism, harshness or otherwise. Sadly, most of the time I also dissect the statement so carefully that it goes beyond a phrase and becomes a diatribe or dissertation in my head. It's not a 'grudge'.. I just remember being 'smudged'.

What was so interesting to me is that the here was this person who spent time near me for 12+ years thinking I was a certain type of person, and I was there too, all that time, thinking I was someone else. I was trying so hard to be the kind of person she describes, but never felt like I was. How does that happen? In this case it is much better to use her perceptions to define my young self. I like the idea that I was kind, and gracious and good hearted etc.

I think, as my Momster says "We become the stories we tell ourselves about ourselves". So what stories am I feeding myself now? What poet's lines? When one of my dearest friends tells me one night in January 2004 after many, many, many drinks, "You have a mean heart"-- is that the perception I had been wearing? do I still wear it? I spend every day trying to be anything but that girl.

I try to tell myself that I am a woman who is starting to have a grip on who she is. I want to think that I am a devoted wife, a good mother, and an aspiring writer. I'd like to think that I am witty and that I am a critical thinker who still has compassion and common sense. I tell myself that I love to go camping, I regularly compost and that this body I live in isn't so bad after all.

These are the stories I am telling myself these days.