Controlling Myself

I remember as a child spending days questioning if, given the choice between two losses, I'd rather lose my hearing or my sight. I tried walking around with my eyes shut, I tried spending a day in silence. I framed it as a question of loss, and survival. I was kind of a brooding kid, sure, but I imagine plenty of people think about these things growing up, wondering: Could I face loss? Is one kind of suffering better or worse than another? Humans by nature compare. That seems somewhat universal to me. What strikes me as the funniest thing about the way I framed the question is the part about, "given the choice." Control freak that I am, right? As if, right?

Yes, wouldn't it be lovely if we could CHOOSE to be given the challenges for which we are best suited! Life should hand us little check-the-box surveys, and then parcel out our offspring appropriately, too...

I grew up with a chip on my shoulder... er, um, I mean, a mantra, that said, "I LIKE hard work. Bring it on. Easy is for wimps." Before we married, I tried to convince my husband to join the Peace Corps with me not for a better reason than that. The one big fight we had while dating was because I jumped to the conclusion that he grew up "on easy street" which I, in my overly sanctimonious ways (forgive me, I HAVE matured some in the decade since then) believed made him "soft." I thought having a dysfunctional family qualified me as some kind of martyr! I had this notion that I paid some "dues" - whatever that means!

It all seems pretty silly now, and I am sure I still have PLENTY more to learn about my own foolishness. My plentiful foolishness.

But one prism through which I've come to better understand how foolish my controlling nature is has to do with the way I have been prone at times to compare special needs parenting.

For as much or as little as you can categorize kids, or special needs kids, I have found myself at times lumping kids with autism into the ill-fitting and unhelpful boxes of "more hyperactive" versus "more withdrawn," and when I have done this I have (foolishly) lamented that I am having a hard time parenting a "more hyperactive" son when my nature perhaps might be better suited to a "more withdrawn" one. If you are currently UNFRIENDING me on FB, just know that I don't blame you, but I really am working on being less controlling, foolish, and, um, stupid. (Just don't call it a New Year's Resolution, because I don't make those...)

To me, there is about as much point in thinking, "I can't handle my hyperactive son," as there is in saying, "You were given this challenge because you are strong." I don't believe either of those two things. As I posted a while back, I've already come to terms with, "You get what you get and you don't get upset," and I certainly have learned that there is no measuring contest for grief and suffering, no prizes awarded. I have also learned that if there were, I wouldn't be anywhere near in the running (not that I mean to tempt fate). Now I'm striving to master the notion, "Life is random and mysterious; live in the now."

The truth, and the confession that I'm baring before you now, is that sometimes when one of my friends laments how hard it is to get their child to play with others, or to take an interest in toys or friends, I feel this tiny reaction that hearkens back to, "I could handle deaf, because I'm not so auditory really anyway when you get done to it, but BLIND? And never READ again? Or SEE my family? NO WAY! Then I'd DIE." Well, I guess more accurately, what (stupid) my knee-jerk reaction says is, "I'll trade you. At least your kid doesn't DIVE INTO a park full of strangers and act SO WEIRD that kids scatter. At least your kid doesn't walk into most groups of other children primed to start a gigantic conflict!"

As if, right?! As if my lot is tragic, or the lot of the child (and mother of the child) whose autism isolates them quietly is not... again, as if there is a quantifiable better or worse to the spectrum of autism's challenges. As if my angst of my son's frequent conflicts would vanish like magic if he retreated into himself more and engaged the world less. (Whoa... Can I unfriend MYSELF? But no, I forgive me for my foolishness because at least I'm trying to learn better.) Of course I recognize that I would not really "trade" my son for anything.

I am telling you that I am not proud of my knee-jerk comparison reaction, and that by broadcasting my own ignorance, I hope that I help improve my own perspective. No, I'm not exactly going to through a celebratory party that my son sometimes hurls himself toward people in awkard and destructive and alienating ways, but I MUST remember, and I WILL remember to be grateful for his friendships, for the empathy he shows sometimes when someone cries, for his passion for life and life experiences. By writing this post, I help myself in the practice of remembering and appreciating. Our journey is to help the Rooster also find centeredness, calm, focus, self-control. Our journey is not so very different from the journey of a family trying to help calm, focused children on the spectrum express their empathy and passion. As the saying goes, "We all have our stuff."

In my quest for getting my head screwed on straight, and in search of that elusive PERSPECTIVE I yammer on about trying to find, I need to post about how I am learning that:

• no one goes through life unscathed, but that doesn't mean there is no JOY along the way;
• there are no "points" for suffering;
• your suffering is not BETTER or WORSE than my suffering;
• your kid is not BETTER or WORSE than my kid;
• my kid's challenges are what I need to deal with, and I bring my own baggage to those challenges, with which I also must deal;
• I have as much or more to learn as my son;
• trying to control the universe and resent it for not complying, rather than trying to become a more patient, resilient, and accepting human being, makes me a kind of deaf and blind that I CAN choose not to become.

I Thought...

I haven't talked much about this, but I have often remembered the first time I ever wondered: What if I had a child with autism?

This was well before we had reason to suspect that we already did.

My baby boy is less than a year old. He has had my heart for far longer than he's been outside my body. I fill journals with letters I write to him, pouring out my love and all my wishes for him -- a precursor to this blog. We are living in our first home, our condo. We are downstairs, we have the TV on, I'm wearing sweats. The Rooster is a sweet, slobbery, difficult baby who sleeps poorly and catches every germ, and he is gorgeous and charming too, and I am still more giddy over his existence than I am exhausted, but only by degrees, and not all the time. Parenthood strikes me as harder than I had expected, though I had not expected ease. Already I frequently feel baffled and awkward at mommy/baby groups but I keep thinking of it as a mommy problem, not a baby problem.

The Rooster is playing on the floor, not too near the TV, because we have been careful not to let him get too much screen time - hIt will be a year before I introduce him to Sesame Street (when my very pregnant body needs a rest after I feed him dinner and before daddy gets home), and I still am allowed to watch things that interest me on occasion. He is playing with farm magnets while Good Morning America is on, and the doctor is doing a medical story about "The Tilt Test." The idea is that you hold your baby in outstretched arms, then tilt him to see if he allows you to, or if he leans his body in effort to not tilt, or something like that -- somehow your baby's performance in this maneuver will indicate to you if he might have autism.

I immediately pick up the Rooster, and my heart starts to pick up its pace. The question has arrived, and we are tilting. The doctor in TV Land indicates babies will clearly do X or do Y in response, but not my baby. My baby seems to do kind of an XYZ thing. Inconclusive, if you even believe the validity of such a test, which I find dubious. I hear the question spoken inside my head: What if? And I think to myself this premature, uninformed, knee jerk thought: "Nothing could be worse than autism." And next I think, "I couldn't survive if my baby had autism." I have no reason to believe my child has autism, and for a moment I am caught shocked by the knowledge that I have neglected to worry about this ism, and in my neglect I have surely jinxed us into increased vulnerability. To make up for lost time, I begin to apply myself to worry about autism, which I know precious little about, in the hopes that worrying about it will serve as protection. I assume having an autistic child means never hearing your child tell you, "I love you," and I imagine that this is the worst thing that can happen to anyone in the whole wide world. As I listen to the morning show segment, hearing the word "autism" over and over again, I picture stereotypes of hopelessness and isolation. I make my boy cry as I keep trying to tilt him, and each time the outcome is inconclusive.

In another couple years, while we muddle through more inconclusive times, when we are asking ourselves these questions again, I will begin my education about autism and children with special needs. I will have as much to unlearn as to learn, and that is saying something.

I'm not a perfect student, and I am still forever asking my husband: Will he be okay? And my husband is forever answering me: He already is okay.

I read at Hopeful Parents today an interesting essay that said that kids with autism are not less -- in fact, they are more. Then have much to teach us. Not everything in the essay resonated for me, but that part sure did.

I've had a little holiday time off, and so I loaded the Kindle software on my phone and read "What I Thought I Knew," a memoir of a special needs mom's unique journey to special needs motherhood. I highly recommend this fascinating story of a divorced woman who discovered in a very unorthodox way that she was already sixth months pregnant, and that her child is likely to have special needs. She is not sure she wants to have or to keep this baby, a baby she did not plan for, a baby for which she is unprepared, a baby likely to have many challenges. She punctuates her tale with lists of things she thought she knew along the way, and then goes on to show you how wrong she turned out to be.

Earlier this month, I woke up with a strong urge to know how those of you who read this blog would complete the sentence, "I thought autism..." I wasn't sure why I wanted to know, and I hadn't yet read the memoir, or even heard of it. Those of you who commented really described similar suppositions to the ones I held. You said things like, "I thought autism was kids who couldn't talk and who just rocked back and forth," and, "I thought autism could only mean 'unreachable'. "

In that vein, here are things I thought I knew, in my own journey as a special needs mama.

1. I thought I knew what autism looked like.
2. I thought I knew that having a child with autism would break me.
3. I thought I knew what happiness looked like.
4. I thought I knew how to make sure I raised a happy child.
5. I thought I knew how to prevent bad things from happening by worrying about them.
6. I thought I knew everything I needed to know about hard work, and that I would always enjoy working hard at any challenge

Here is what I know today:

• I have a child with autism. He tells me he loves me in so many ways, not just with words alone. He is not broken, nor are my friends' children who cannot say the words out loud. I am not broken, either. We are only as isolated as we choose to be.
• Happiness looks different than it used to, and I get my share. I cannot GIVE my children happiness, but I hope I am helping them find, create, and embrace it.
• Worry is just a black hole where time gets lost. It tugs at me all the time, but I fight to keep it from sucking me completely inside its vortex.
• Sometimes life is hard. It is a work in progress. It is at the mercy of time.
• Life changes, and life changes us. Much of what I believe I know at any moment in time will require some serious unlearning and relearning later.

What about you. What do you know? Is it what you thought you knew?

411?

Calling all wise advisors:

Irlens Syndrome: Heard of it? Believe in it? Should I spend $1000 and drive an hour each way to drag my son to yet another evaluation to find out if he has this visual processing problem that will require him to wear unusual looking filters on his glasses and potentially help him see/read/process/visualize better? Very tempting...

Goodnights: When do you encourage kids to try sleeping through the night without them? Peaches, NT, will be 4 in March, and it's tempting. Roo, with autism, is 5 1/2 and I'm guessing not ready for a long while... but I don't want to add to the problem.

Melatonin: Bad to use it every night forever? I mean, yeah, I know it is, I think. But. Well. You know. Can I? I mean... talk to me.

Forgive the greedy cries for help. Only if you have a sec. Oh, yeah, it's Christmas and New Year's and you have kids of your own... forget I asked...Love you anyway. Kiss kiss.

Food

We don't eat fast food at our house, but sometimes I wish we could.
Oh, I don't want the grease and the carbs and the junk. I've never big a drivethru kinda chick. Just that word, "fast" seems so delicious sometimes. I miss fast. Everything about our eating at Casa del Rooster seems slow since we went GFCF, and not just slow, but tedious, dull, and unfulfilling. If it can't be tastier, I wish it could at least be quicker and painless.

I am glad we went GFCF, because I know when my son is on the diet, he has fewer complaints of stomach pain, more comfortable digestion, and, according to our documentation, better focus and behavior. But I am not good at GFCF, because I am not a natural cook, and the half dozen things I learned to cook well before we had kids don't translate into things my boy can eat, so my grocery budget has quadrupled as I try to make up for my lacking skills by buying from Applegate Farms, So Delicious, Energy, Amy's, Ian's, Pamela's, etc.

At my house we now eat separate, kind of pathetic, uninspired meals. Oh, most of us eat quite healthy food, and I feel a surge of joy when I give my kids nutritious meals that they enjoy. But it takes about forever. It takes four grocery stores, orders from Amazon, 25 mile drives to a specialty bakery, time spent scouring gfcf blogs, sneaking off if the rest of us want to enjoy some delicious gluten the boy will covet... food has lost its joy in a lot of ways, and at Hanukah and Christmas, I find myself a little bummed about it.

Yeah, all you great cooks out there? Especially you soulful food writers at (Never) Too Many Cooks? You put me to shame. I want to be more like you, but it ain't going to happen. I love to read about your delicious creations, but as a voyeur. My chef's hat is off to you, and I sincerely hope your families appreciate you.

Feeling a little homesick as the holidays approach and my East Coast relatives hunker down to watch the snow fall, I especially long for the comfort foods of my upbringing. They will not by on our table this year. But I wanted to share them with you, and maybe they will inspire you. Don't worry about how they sound, trust me about how they taste. They are perfectly satisfying, and they taste like love. Make them if you get the chance. Would I lead you astray? No, I can assure you I would not.

"Candied Sweet Potatoes"
(No, you have never had anything like this, I promise - recipe from faulty memory, handed down through generations, and my family doesn't measure)
Bake several big fat sweet potatoes on cookie sheets lined with foil until the smell fills your house and you can hardly stand it you're so hungry, then hull them out of their scalding skins into a bowl of butter, and lots of it. (I have a special pair of potholders for this very purpose, used only in November and December each year for Thanksgiving and Christmas.) Stir in 1 or 2 jars of Marshmallow Whip (those wonderful glass jars filled to their blue lids with jetpuffed marshmallowy goodness and heart clogging corn syrup). Add a few dashes of vanilla and plenty of brown sugar. Fold in coconut. Yes, just what I said, you can thank me later. Grease a baking dish (I use 11x17), and spread your heavy sweet potato mash into the dish. Heavily sprinkle brown sugar all over the top, and then another sweet sprinkle of coconut. Bake it again.
Share with people who will go back for fifths, sixths, and blame you for it a week later when they cannot zip their pants. You will still be smiling.

Blueberry Cream Pie
Preheat to 400
Mix together about a cup of sour cream (lite is fine), a couple tablespoons of flour, about a cup of sugar, and a beaten egg.
Fold in blueberries (pint to pint and a half)
Pour into a pie crust (I like graham cracker best)
Bake 25 minutes, while making topping
topping: 3 TB flour, 2 TB butter, 1/4 cup chopped pecans
Sprinkle topping on pie and bake 10 more minutes
Chill - should be eaten COLD.
I have TMJ, and when my grandma made this pie for me, it always caused me to smile too wide, so that when I chewed and smiled like that, my jaw ached. What a fool I looked like, grinning ridiculously, stuffing my face, holding my jaw, eyes watering in pain and ecstasy! Holy cow how I miss that.


Ho ho ho!
Bon appetite.

With Your Own Two Hands

In my last post, I had these aching need to know how people would complete the sentence, "I thought autism..."

Not sure why I had to know, but I appreciate those of you who replied. Turns out we all thought the same things about autism. Turns out we were pretty much wrong, and mostly that is a good thing.

Now I have another question for you. See, lately my kids have wanted to hear Jack Johnson singing With My Own Two Hands pretty often, and I've come to think of it as my Rooster Calls song, in a way my autism theme song. (It's not really as much about us, or about me, but it's more about you, about the autism community. You change the human race, and you tell me I can, too, but you remind me that though you can hold and comfort the Rooster clan, that we need to use our own two hands, too.)

And I wondered: does anyone else have a song like that? Do you?

If you do, can you comment and tell me what it is? Do you have a theme song?

Here is ours:

by Ben Harper

Now I can change the world
With my own two hands
Make it a better place
With my own two hands
Make it a kinder place
With my own two hands
With my own, with my own two hands
With my own, with my own two hands
Now I could make peace on earth
With my own two hands
And I could clean up the earth
With my own two hands
And I can reach out to you
With my own two hands
With my own, with my own two hands
With my own, with my own two hands
I'm gonna make it a brighter place
With my own two hands
I'm gonna make it a safer place
With my own two hands
I'm gonna help the human race
With my own two hands
With my own, with my own two hands
With my own, with my own two hands
Now I could hold you
With my own two hands
And I can comfort you
With my own two hands
But you got to, got to use
Use your own two hands
Use your own, use your own two hands
Use your own, use your own two hands
Oh, you got to use your own two hands
With our own, with our own two hands
With our own, with our own two hands
With our own, with our own two hands

I Thought...

Please.
Complete the sentence?

"I thought autism..."

This sentence starter plagued me while I slept. I woke up not knowing why, but needing to ask people to finish the sentence. Will you?

You thought autism...

?

Notable and Quotable Twelve

First, a big thank you. Those who comment here are so appreciated. (Kristen, Touch Math is really seeming just right for us, btw, and I owe you big.) Second, an apology that I'm not commenting more lately on blogs I follow. I'm sending good thoughts reading every word... on my phone, though, where it's harder to comment. I am treading water over here, as I know you can relate, but my resolution for 2010 is to be a better commenter.

I'm listening to Lyle Lovett right now, wishing I had a pony and a boat. Time for a new Notable and Quotable!

Peaches: Well, I'll go SEE Santa. I'll tell him what I want for Christmas. But I don't want him to touch me. And I AM NOT sitting on his lap!

*

Peaches: I don't like firemen. They are mean. When you do something wrong, they fire you.

*

Rooster: Mommy, please can we go to Christmas now? I want my presents.

Lemon Aid

Today was our first parent teacher conference since the Rooster started kindergarten, and I'm determined to make some lemonade.

Lemons: The Roo is not making any measurable progress in math. We understand that he struggles visually (poor kid likely had double vision until he was 3 and had eye surgery) and spatially, and that math uses the same part of your brain that relies on those visual/spatial skills. We also know that the lemon doesn't far fall from the tree, because Roo's parents are writers for many reasons, including math avoidance. On the other hand, we also know that, for all his pragmatic and conversational challenges and his mitigated echolalia, our boy does have a lot of verbal skills. He has a gargantuan vocabulary, was born with a book in his hands, and his ADHD virtually vanishes for as long as you sit down and read to him. Therefore...

Lemonade Recipe: We are going to squeeze math into every activity we can for the foreseeable future. But we're going to do it with a spoon full of sugar. Nope, we are not signing up for Kumon or tutors, we aren't buying flash cards or drill and kill software. I'm going to approach it from the Rooster's strengths and interests. Today I picked 10 library books about numbers. To Roo, who already spied them and insisted I start reading, they are books about bus rides and chicken pox, but they also have counting, evens and odds, and problem solving in their story lines. On the car ride home today when the kids wanted me to sing Jingle Bells again, I got them interested in the inchworm song instead. (Two and two are four, four and four are eight...) Our beloved ABA helper, JT, is in on it, so when he used Roo's token economy system tonight, he said things like, "It you already have two tokens, but you need 3 to get TV time, how many more tokens do you need?" I have buckets of ideas about creating math based audio stories, and some web 2.0 tools that might help me craft my own games and stories...

Like most mamas presented with a challenge facing their offspring, I'm ready to leap into action, perhaps starting off with more ideas than useful, perhaps a little more gung-ho than necessary.

But here are some of the sweetest things about the lemons on our plates right now:
1. My boy's teacher sees his biggest problem as MATH. Huh. I'm too terrified of the deities these days to tell you what I expected her to say about his many issues, but I will say this: I will gladly take MATH being his biggest challenge, if you catch my drift.
2. Literally within two minutes of wondering what math tools might best serve my son, I happened to glance at Google Reader to see that This Mom had written about the curriculum that works for her son. Stuff like that? Wow how it makes me want to drink a toast to the This Mom, the Internet, the blogosphere, and my special needs community. It didn't matter so much whether or not that math curriculum would be the right one for us, it mattered that I had a cyber friend to turn to, and a seed of an idea where to begin my search.
3. You know what? Who needs a third. Those two are sweet enough. I have some other numbers I need to go work on right now, to make lemonade for the Rooster.

Ho Ho Ho

I have mentioned it before, but it's time to say again what fantastic in-laws I have.

And I'd be grateful for them, to them, regardless, but let me tell you, being a special needs mama makes me really HUGELY appreciative to have the kind of in-laws I have.

First and foremost, they love us all. They listen. They HELP. They encourage and support. They lend a hand, they babysit, they invite us over, they serve GFCF food. Want to know what they do NOT do? They do not judge, criticize, blame, or hurt. Wow, I am just as grateful for all of that as I am for what they do.

We spent Thanksgiving with J's parents, and I had a serious cough, laying me kind of low. They made me feel better, in more ways than I can tell you.

And now, guess what? J has arranged our gift to each other, and between Christmas and New Year's we're spending a night or two in a hotel near his folks' home, while they watch our kids. Of course, it's my in-laws who are really giving us this amazing and generous gift, because no fortune in the world could make it possible without them, and it's a gift no one else in the whole world could give. There is no one else who has ever, let alone who could, who would, who we would want to, keep my two beautiful, darling, sweet, funny, smart, unique, quarrelsome, impulsive, high-energy, demanding, emotional, needy, diet-restricted, Good-Night wearing, sleep disturbed, early rising, rambunctious children. Heck, half the time I don't feel qualified to watch them myself.

Of course, I must not look too forward to the holidays, because that is something those pesky deities frown upon mightily, but no matter what happens, I know that my husband's parents are two of the best gifts he ever gave me.

Nothing but the Truth

My favorite joke these days is an old joke, a dark joke, a joke many of you will not find a bit funny.
But it's a free country, and we're all entitled to our own sense of humor. Since I've worked hard on being thankful and positive for the last few weeks, I think I need a little outlet after five days home, if you know what I mean.

So what is my favorite "joke" lately?
Nothing.

I mean that literally. It goes like this, with numerous variations on the theme... I take my kids somewhere, usually a place that is entirely for them and costs me a small fortune, and they fight, spit, scream, whine, cry and scream. On the way home I say, "Know what I really enjoyed about that experience?"

Wait for it...
"Nothing."

Yes, it's childish and petty and unnecessary, but C'MON. Seriously. Must I implode?

Today, for example, we drove an hour to try to have a family meal at a restaurant that was our last best chance at being Rooster (and Peaches) friendly. This place is ON THE BEACH. It has the word PARADISE in its name. You sit with your feet in the SAND. They have a gfcf fruit salad to kill for, chicken fingers that Peaches loves and rarely gets to have, and they bring you crayons and coloring pages. This should be Nirvana for both of my kids. But all the way there Rooster was upset because he wanted to be watching TV. Peaches was in a frenzy of "mine." We got a table facing the freaking Pacific Ocean, the breeze blowing, pretty girls sunning themselves, no overstimulating noises, no crowds, no dramas anywhere but at our table. We had fast service, the works.

But know what I enjoyed about my meal?
You certainly do...
NOTHING. I might have hit gratitude overload. I am so sorry about that. I know I should be grateful for the little bit of salad my children's fighting and SPITTING (GROSS) and fork throwing permitted me to shovel in, and I really and truly am glad I have food to eat and money to pay for my food, but I wanted to scream as badly as I've wanted to scream in a long time.

So I come here. I scream into blogland. I scream out my dark humor, and it makes room for me to find my sanity again.

I enjoyed Thanksgiving. Best one we had in years. I am grateful for the reminder to be grateful, too. I am wholly aware life could be a lot worse, in myriad ways. One glance at the news is all it takes to remind me should I begin for forget even for a second. I think often of how much real suffering there is in the world, and I count my blessings, too.

But you know what I'm liking about autism these days? What I'm liking about what autism means for our family life?
NOTHING.

Whewww. Thanks for letting me get that off my chest.

Anissa

Have you heard about Anissa Mayhew?
I had never heard of this mommy blogger before, but she's been on my mind all weekend. I'm going to think about how I can help her family, because I know that's the best way to help her.

http://www.caringbridge.org/visit/anissamayhew/mystory

Bloggy Thanksgiving

Oooooh, please, please, please, if I accidentally fail to mention you here, KNOW that I grateful for you. I read your blog. I value your comments. I feel your support. I just NEVER EVER SLEEP so I mess up sometimes due to the cognitive toll of CONSTANT wakefulness. But I appreciate you! Just for being here. And some of the people I appreciate I realize don’t even even have ANY IDEA who I am…and I’m totally cool with that...

This Thanskgiving I feel the need to say how thankful I am for the blogosphere. I need to say that I am grateful for so much, but on the long list are:

Christine reconnects me to the place in geography where I was the happiest. Not only does she live in one of my former hometowns, her blog feels like a home, too. She has the kind of life, of demeanor, that I had envisioned for my own self when I was growing up. I didn’t turn out nearly as patient, reasonable, or domestic as I expected, but maybe there is hope for me yet, as I learn from Christine, or maybe she can at least help me learn to forgive myself for my shortcomings. In some ways, Christine is like my invisible friend. I mean, she is a very real, very bloggy friend, with whom I can email or Facebook. But sometimes it is Christine I talk to in my mind as I drive home from a long day, or whose advice I seek in my mind when I’m trying not to choke my children. I have never heard her voice, but imagined it many times, reading her blog posts over and over. She has written words that felt like gifts to me. Her blog is very lovely, and though our contact is largely indirect, I am thankful for Christine.

Beth inspires me to what bravery I can muster, because she exemplifies bravery, especially in dealing with things medical. One of the bravest things I’ve admired about Beth is her ability to listen to her own intuition. She learns all she can from doctors, her amazing husband, reading, and her gut, and sometimes her gut has the wisest information of all. That is why her boy has beaten so many odds and defied obstacles to thrive so beautifully in her care. Her blog shows so much wisdom and balance, and I read every single word of every post with gratitude. Plus, Beth handles sleeplessness so much better than I do, and keeps her sense of humor about it, making her a hero for whom I am very grateful.

Mama Mara blows my mind. She flaunts brazen humor about some of the dark things many of us shy away from, and she does it with fierce creativity. Mama Mara shows me that we can all do things that we don’t think we can, and she helps me remember that no matter how big a turd life throws in your face, there is a good book that will help you figure out how to flush it down. Plus, her potty mouth makes me look virtuous by comparison, and I like that. Rarely do I (a sailor-talker in the f2f world) look virtuous. I admire MM because she refuses to let a bad man equal a bad life, and that gets a big A-Men from me, and because she fiercely loves her sons just like I love mine. I appreciate her candor.

Vicki took what life handed her and refused to break no matter what. She writes it like she lives it – honestly, openly, with passion and poetry. Vicki lives a lovely life. She helps me realize I do too. I appreciate Vicki’s effort, her example, her wisdom.

Drama Mama cheers for us all. She reminds many of us that we stand where once she stood, and we will make it to the other side like she did if we just. Keep. Trying. Plus, Drama Mama speaks to my inner Fancy Nancy. Mostly I’m a tomboy type who slouches around with my fists tucked in my jean pockets, but sometimes I read Drama and realize it’s time to get my eyebrows waxed and live a little. I appreciate her flair! Her style! And I just flippin’ worship her kids.

Redheaded Mama is an artist. I mean, yeah, there’s her design work, but she’s an artist through and through. And she’s generous. If she has a resource, then so do you. She practically wrote us a minute-by-minute guide to Disneyland for spectrum kids. And then when she and her daughter came to Disney, guess who else they visited? ME! Getting to meet her in person was so satisfying, so real, so blog-comes-to-life. I appreciate Red’s beauty.

MOM-NOS is kind of an idol, isn’t she? She’s like the beloved celebrity that every fan thinks they have a personal connection to unlike anyone else’s. I know I am not the only one to say this, but MOM-NOS’s blog was one of the first I read, and the one I clung to, the one that made me sure, the one that made me sad, the one that gave me hope, the one that made me feel I finally found someone who understand. She welcomed me to the fold. She works at a college, and for some reason that always gives me this feeling that MOM-NOS is my RA, because she has so much sage knowledge from having already learned lessons I’m still learning. And? Wow can she write. Sometimes spare, sometimes lyrical, always on message, always exemplary. I am so thankful for MOM-NOS’s wisdom and generosity.

Jess is the powerhouse. I used to have Jess’ energy. I think I was twenty at the time. Jess is a hard working career woman who is equally as hard working at being a mom, and yet as hard as she works, as driven as she is, she is also always ready to emote. I deeply appreciate the sincere emotions she shares, the way she owns her vulnerability. I am always grateful for how prolific Jess is, that she is so often just there, writing, facing what needs to be done, admitting how hard it is, and embracing all of us going through similar trials.

P is a blog reader of mine because she loves me since way back when, and knows I love her too. P accepts the crazy family I’m raising now with the same kindness, affection, and simplicity with which she accepted the crazy family that raised me. P supports without judgment, and loves without condition, from thousand of miles away, and I appreciate P for being my steadfast, solid, sister-like friend, and for making me a quilt that makes me happy and gives me comfort every single time I look at it.

PixieMama lives 100 miles an hour much the same way that I do. Pixie and I, we have lots in common for women 3,000 miles apart of different ages and different religions and with very different lives. We can talk, and we do. Pixie Mama came to visit, and proved we can have visitors in our house. Pixie teaches me not to apologize so much. I am grateful to Pixie for liking me, and my family, in spite our ways. I am also grateful that she gave me my mantra, “Be OK” and my nickname, SkyBluPink.

JoeyMom never says she is tired. She makes me want to say it less, even! I find this very admirable. She has two delightfully squishable boys, and I get the feeling that, between teaching and raising them, she might just be a teensy bit, well, fatigued. But she keeps things positive, and embraces opportunities to have fun with her guys every chance she gets. She has some creative ways to channel her boys’ energy, too, and when I run out of ideas at my house, I think, what would JoeyMom do? I appreciate her for many things, especially for inspiring me.

I found Gretchen, and MOM-NOS during my first foray into special needs blogging, and I remember thinking, “Yes, my son must have autism” at the same time I thought, “This beautiful mom knows what she is doing, and I like her. Maybe I can cling to her. Maybe she will guide me out of my fear and into some light where I can make a plan and find my way.” Yes, thank you Gretchen. And thanks for making me laugh. I love how you write. I love the quotes on your blog; it’s funny, I think YOU are one of those moms who can do everything! I am so glad for all that you share.

Betty and Boo’s mom writes about spectrum stuff, AND she writes about what was my PASSION before I ever had kids or knew much about autism and Aspies: BOOKS! I really appreciate how she pursues that passion, and I live a bit vicariously through her in that department.

PBear leaves me incredibly supportive and useful comments, not just in my blog but by email, from a mom who has been there and gets it. She somehow manages to work, go to school, raise two kids, and send me encouragement. That’s amazing, and I’m grateful.

My dear old friend C reads my blog even though she has heard it all by talking to me on the phone, and then she sends me encouraging messages AND tells me she likes my writing. I’d be lost without C. That goes for E and D too – dear old friends who stick by me come what may.

Kristen has a blog I enjoy reading not just because of what we have in common, but because of her writerly life. I appreciate how she opens up about her writing, and I enjoy reading about her process. I sometimes imagine scenarios in which we meet, hand out, write…

J is a colleague, a friend, who reads my blog and then sends me resources. WOW, everyone needs a friend like that. I am so grateful for the articles, the links, the suggestions, the ideas… not just about autism, but about EVERYTHING. I appreciate J for being a wealth of knowledge.

Know why I like Good Fountain? It’s probably the same reason anyone likes her. Am I wrong, or does she just seems, well, GOOD. I like what she says! I like how she says it! She has good, simple, kind ways about her. I loved it when she said that some of what she likes best about her daughter is what makes her quirky. I sometimes feel that way about my son. And one post she wrote really stuck with me. She said that what we all need to feel good about ourselves is connection with at least one person, and that she hopes her kids have that. Yes, it’s simple, but it’s true… for our kids, for us, one good friend is what it takes. I wish our kids could play together.

JHV and I were f2f friends about a hundred million years ago, but geography and time don’t end friendships with someone you value. I adore JHV, and what I appreciate most? That someone as smart, artistic, spiritual, and busy as she is… she still likes me! I think I’m surprised by it. I miss JHV. I am so thankful she sent her sister to my blog, and Jen of I’m Going Coconuts. I am so grateful she reached out when my boy was diagnosed, had her friends care about me, send their thoughts of love and their generosity to me. I am thankful for JHV’s friendship and love and hope and goodness. I think of her every single day when I see my very favorite photographs.

Jordan probably doesn’t know what a fan I am, because without meaning I tend to lurk over at her blog. I guess I never feel like I have anything to offer, but I value what she has to say. And I can so vividly picture her two sweet sons I’ve never met. I found Jordan because everyone pointed me to her; they said she is a smart mama, and an amazing resource, and they were right. Thanks for all you do for everyone with special needs kiddos, Jordan.

There are tons of things to value about Kyra, but they all relate to her positive nature. Every time I read about the way she uses the Nurtured Heart approach, I admire her more. And another thing: Kyra points me to other blogs and resources that I treasure.

GFCF Mommy helps me feed my son, and find joy in doing it creatively, nutritiously. I am so grateful for that. I know I’ve never commented on her posts, but I am a loyal fan.

Good Mum has made me laugh so hard before that I made embarrassing noises. That is worth its weight in gold!

Jen, who says she’s going Coconuts, is as solid as a rock, and has a big, beautiful, giving heart. I appreciate Jen.

My inlaws read my blog, and I feel so fortunate that they take the time to do that, and that they forgive my wallowing. I tell them pretty much everything, and they still read it online again, and don’t seem to get too sick of me. Listening is an act of love, and they are very loving. I appreciate my mom and dad.

Gwyneth writes some heartfelt comments and sends encouragement all the way from Africa. Years ago, we hung out, went shopping, tried on clothes together, wished our wishes. Never in a jillion years did I picture where our roads would take us. But when she comments from Malawi, I feel like she’s right here. And her blog, Misadventures in Malawi, is captivating, and I appreciate the way she shares her life with me, and lets me share mine with her.

ASDMommy writes so tenderly about parenting, I’ve repeatedly had the urge to hug her, drop by with yummy food and hang out in her kitchen, and then I realize that if I bumped into her in the grocery store I wouldn’t realize it. How is it that we have never really met? I’ve invented her voice in my mind; it’s a clear voice I appreciate every time I read her blog.

I appreciate Hannah’s mom, too… I read about Adopting Autism and find so much perspective within it… and that Hannah is a great character…

And I could go on… but don’t you want me to get a little tiny drop of sleep?
I appreciate you, blogosphere. Love.

Word to the Wise

Dear Kindergarten Parents,
Have your children mentioned a curly haired blonde boy in their class who sometimes has quirky behavior? That would be our son, Rooster, and we want to let you know that, despite his quirks, Roo has more in common with his classmates than he has differences, but that his differences stem from autism.

Rooster does not know about this diagnosis yet, and we want him to hear about it from us, not through conversations with classmates. For this reason, we ask that you please NOT mention his diagnosis to your children until we are ready to talk to him first. We are writing to you in the hope that you will understand our son a little better and feel inspired as we do to help our children become friends.

Autism gets a lot of attention in the news lately, but the media often doesn’t provide a very clear explanation of what autism is, probably because autism isn’t just one thing. Autism is called a “spectrum” because it includes many kinds of disorders. Some people might think of the movie Rain Man, assuming any person with autism is shy, does certain odd things over and over again, and has a special kind of genius. Our son does not have that kind of autism. Rooster is a talkative little boy who is intelligent, affectionate, creative, and loves to make friends. Because he does have so much in common with typical kids, it’s no surprise that people can feel confused by his behaviors and his language. That’s why we thought it would be a good idea to write you this letter, and hopefully help you if your kids have questions.

What does autism mean for the Rooster? For one thing, he has some communication challenges. He has a huge vocabulary, but it’s very hard for him to say what he means. The thoughts are there, but they often come out jumbled, and he gets frustrated sometimes trying to express himself. Sometimes that causes him to “talk nonsense,” or to start a conversation in the middle without any context, or to quote something he memorized from a book or movie. He also has trouble making sense of what people say to him. He just can't listen as fast as most of your children talk, so he takes a while to answer questions, and sometimes he misunderstands what he hears. It’s like trying to read this letter if someone marked out every third or fourth word – it would be confusing and frustrating.

When Rooster gets frustrated, his behavior isn't always ideal. For that reason, we work on language and behavior skills with a trained specialist after school for two hours every day, 10 hours a week.

Our Roo has autism. It's just one more fact about him, like his brown eyes and his curls. We certainly don't want to ever use it as an excuse for him to be anything less than his best, and we expect him to learn how to adapt to the world around him, not the other way around. We also don’t consider his diagnosis a secret or a cause for shame. Rooster hasn’t learned about the word “autism” yet because we don’t feel that at age 5 he is ready to comprehend it or to put that word to good use. But we feel like if we help adults in his community understand it, they can help children be accepting of all children, tolerate all people’s quirks, and be patient with our boy in particular. We know that he has a lot to offer friends, as well as a lot to learn from them.

We are new to this school and we are eager to build a sense of community where our family can make friends, give back, learn and grow. We are always happy to answer any questions anyone in his community might have about autism, or, more importantly, about Rooster. If you have the chance, we hope you'll introduce yourselves to us at school, or by email or phone. We are eager to know you, and to know your children, too. We hope for a happy and successful year for all of Mrs. Smith's* kindergarten class.

Thank you so much for taking the time to read this.

Notable and Quotable Eleven

Me: Rooster, behave yourself.
Rooster: You TOO, Mommy. You too.

Peaches: Mommy, what are they talking about on the radio?
Mommy: (quickly turning off the news, talking about Ft. Hood) A man had a fight with some friends.
Peaches: And they died?
Me: Yes, honey.
Peaches: Like Michael Jackson? And Rosa Parks? And Noah from the Ark?
Me: Yes honey. I am sad to say that is true. Those people died.
Peaches: But nobody in my family dies.

Me: Peaches, STOP touching your brother, or...
Rooster: (hand up) Mommy, I can handle this! Peaches, you behave!

Rooster: Ew, daddy. Stop kissing mommy, that is gross.

Rooster: Mommy, can I kiss you and we get married?

Peaches: When I get big can I marry Rooster?
Me: No, honey, that's not how it works.
Peaches: Ohhhh! But I really want a ring. A big one.

Happy Thanksgiving, Early

Dear Rooster,
Thank you for tying your shoes tonight. I know it is pretty hard, and I know it takes forever. I know you don't want to, and I know you don't see the point when there is so much Velcro in the world. Thank you for trying, thank you for learning to persevere. Thank you for your delightful smile when you finally finished. I'm so proud of you I could bust.
Love, Mom

Dear ABA friend JT,
Thank you for making the Roo tie his shoes, and thank you for teaching him how. Thank you remaining so calm and patient when he screams and throws his shoes. Thank you for seeming completely and entirely genuine when you cheer loudly at every stage of success over the weeks of shoe tying. Thanks for believing he can do it even when there is no proof. Thanks for understanding that shoe tying has nothing to do with shoes for us, because there IS plenty of Velcro in the world, but everything to do with perseverance. Thanks for helping Roo learn the meaning of the word perseverance.
Warmly, Rooster's Mama

Dear Rooster's Dad,
Thank you for talking me in to trying ABA for our son. Thank you for getting us into the program through Regional Center, signing up for the course, and spending two Saturdays in a row agonizing through the lessons. Thanks for teaching me what you learned, and for helping me apply it. Thanks for helping me remember to celebrate and be grateful. And thanks most of all for marrying me. Now please do something about those dirty clothes! I love you. Your wifecita

Dear Me,
Remember that nothing is forever; it's a double-edged sword. Appreciate what you have, and remember not everyone has it. When nothing else works, try humor. And whenever you can, sleep. Now, for instance.
Good night.

Notable and Quotable TEN

Peaches is three.

Peaches: When you get married, you only just (pronounced: yust) get one husband, and that's ALL. No more, yust one.
*
Peaches: Today at school I made two letters to Santa.
Daddy: What did they say?
Peaches: I don't know. I can't read.
*

Peaches: How come when it's dark outside it's not even a little bit light, and the blue gets all black?
*
Nurse: Peaches, I need to put this little machine on your finger, and it's not going to hurt at all, it's going to help us find out how well you are breathing.
Peaches: Oh, does it take my pulse?
Nurse: HOW old did you say she is?

Where Are You?

Dear G,
Well, I've been avoiding doing this, but I feel like I have to say something. I mean, KNOCK KNOCK, are you still there? I'm worried about you. You've gone all... dark and quiet, so unlike you. I think I like it better when you rant and rave. Since you've been in retreat or whatever I've been thinking you might explode, you know? You're usually so... emotive! What's going on? Are you mad, sad, scared? Is it all about autism, or is it more? Can I do anything? Take care of yourself... WRITE.
Love,
Me.

Dear Me,
Thanks. Good questions. Not sure. Yes, and no. I'm ok, I think. Just can't quite find my sentences. Maybe a poem?

Where was I?
Wound licking
worry wicking
nothing clicking

treat tricking
list ticking

fingers flicking
a bit of ass kicking

no room for goldbricking
stuck doors still sticking
mind-pimple picking

thin or thicking
where i am

Love, G

In the Presence of Presents

I've been wanting to write about a new ism facet the Roo has been exhibiting lately, for lack of a more diplomatic way to say it, these last few weeks. I wanted to write about it because, frankly, the behavior drove me crazy, and I wanted someone to help me understand it, tell me if they've seen it in other kids, tell me how to make things more manageable.

Well. Today I went for a jog. I might have gotten a bit too woo and metaphor-happy in the fresh air because I started to see things in a new light as I sweat through the issue.

The problem confounding me has been how the Roo receives presents. It USED to be that if you calmly gave him just one surprise item of anything, including new underwear, he'd make big happy eyes at you and say, "Wow! Cool!" He was GOOD at "Thank you." Of course, if you bombarded him, say at Christmas or Hanukah or his birthday, he'd tear through stuff like a tornado and get all moody and run around overstimulated. Lately, a new wrinkle: even if Roo begs and begs and begs for one item, or if you surprise him with one item, when he gets it, he goes all crestfallen and dramatic, and he tantrums. It could be something you already know he loves, something cool he's never seen, or the exact object of his desire, and it doesn't matter. Full on sobbing ensues within minutes of getting the gift, whether it is wrapped or not, whether it's presented matter-of-factly or not. He always says you got him the wrong thing. He is always disappointed. It's happening often, at home and around others.

So, I was starting to feel grumpy and bitter about this, all taken-for-granted style. Like I said, I was thinking how, well, annoying it was, and I was thinking pretty unhappily about autism. I wanted someone to justify my annoyed feelings and offer a remedy. Maybe part of me still feels a little like that, but I told you something all mushy came over me on my jog, so you know where I'm heading, and YOU know that I know that I might be stretching things, but at least it's working for me, this other perspective...

Maybe when the Roo gets something, it isn't some hugely bizarre thing to feel disappointment, because don't we NTs do that on a different scale? Aren't I, his mom, the tree the apple fell from, constantly wailing that nothing is ever good enough?

When I was a kid, growing up in Dysfunction Land, I believed if I ever escaped, I'd never ask for anything more of the universe, or God, or deities, or karma, or luck, or Fate, or fortune, or whatever. But getting out was far from an end to my tears and wishes. When I found myself in a bad relationship, I told anyone who'd listen that I wasn't looking for Mr. Perfect but just for a real and soulful partner with whom I could build my life -- a deal I forget all about when J's mountain of laundry I washed topples over before he puts it away and it takes him six weeks to rehang the toilet paper holder on the wall. Now when I beseech the universe to make my son have better behavior, I overlook that moment when I was pregnant but having some spotting early on and I beseeched the universe just to give me a healthy baby and then I'd never ask for anything, anything, anything, ever again.

Sure, I'd still love to know if any of you have any insights or wisdom about how to help my boy feel better about receiving things. But right now, I'm feeling like the very best gift I can give the Rooster is more of my patience and tolerance while he works through his emotions.

And clearly I ought to jog more often, doncha think?! :-)

Bah Halloween Humbug

So I just had what I thought in the moment to be a clever idea. I thought I'd look back at old posts from a year or more ago to try to appreciate how far we've come. (Can you tell I was needing a little pick me up? Sense any desperation much?) I even though, "Hey! I know! I can even write to myself of a year ago, and that will make a really meaningful writing activity, a great blog post, a way of reflecting and a process of self discovery!" (Stop retching, it's rude.) So, getting all excited, I tell my husband the idea, and, sitting next to him, I open up Rooster Calls and look up my blog from last October.

J was reading it over my shoulder, noticing in synch with me what was painfully obvious and obviously painful: What I wrote then I might as well have written today! Yes, it's just one post, but a year ago? The Roo? Said the EXACT SAME THINGS about Halloween, and now we deal with the EXACT SAME struggles.

Ah, so much for growth! So much for trying to be clever. Well, anyways, so much for Halloween. I'm going now to search for another post from about year ago that validates me in some way or other, or I'm going to the kitchen to main-line the gfcf Halloween treats I ordered online for sixty trillion dollars.

Catch

Tomorrow, I have some SERIOUS catching up to do. No, not just the bills and housekeeping sort.

In the last few years AD (you know, after diagnosis years), I have become shamefully accustomed to missing birthdays and anniversaries; something entirely unheard of in my BD life. I guiltily scramble to get in belated cards before it's too late for even those. However, much worse than that, I've even begun to miss marking the anniversary of the passing of those close to me, and the shame of that I need to begin to clean up first thing tomorrow.

I've mentioned within my blog before that I became pregnant with the Roo at the same time that a friend, N, became pregnant. Our somewhat new but already special friendship grew deeper during our pregnancies, and I brought yet another friend into our mix who also was due at the same time. When we three had our babies within three weeks of one another, it was natural that we bonded even more and organized our first ever play date together. I still pull out a photo from time to time that shoes the three car seats lined up, the newborns so tiny and beautiful. We moms shared our experiences, took turns rocking babies, ate a little lunch, swapped stories, arranged our next get together that day. Less than six months after that photo, N's baby was gone. It's still so difficult for me to put that sentence into writing, to remember that heart wrenching time.

I have never stopped thinking of baby Katie. Recently, just before the fifth anniversary of her passing, I was thinking about her even more than usual, thinking of her mother. And then, suddenly, it was just after the anniversary. How did that happen? I have no idea; each year, our other friend and I make sure to reach out to N and to express our love for her, for her daughter who is so missed. Before the anniversary, I'd been trying to decide how I wanted to make my remembrance of Katie this year, and I was contemplating signing up for an upcoming local SIDS charity walk. Poof, time warped, and it's weeks later.

Tomorrow, I'm calling N. I'm going to figure out where to begin, somehow manage to convey how sorry I am for missing her birthday, for not reaching out to her on the anniversary of the worst loss imaginable, to tell her I love her, to ask about her beautiful boys and her loving husband and her work, to tell her I never forget. I hope she will understand. Knowing N, she will. I think she knows how much her friendship means to me, whether we are in contact or quiet for a spell. I think she knows that I not only mourned the passing of her daughter, and celebrated the life of her daughter, but hold fast to the lesson that life is short, and our children are precious.

Katie was Rooster's first friend. I wanted them to grow up together.

I never forget that I am lucky.

Another friend of mine, at least I would like to call her that despite never having met her anywhere but on our blogs, posted today about how important it is to tell people how much they matter to us while they are here, and not wait until after they are gone. I think her wisdom and her thoughtful post helped me today, and will help me do my serious catching up tomorrow. In her post, Jess wrote something of an open letter filled with friendship. It inspired me to say this to you, reader:

Many of you are people whose birthdays, losses, or other meaningful times I've not properly marked as I should these last couple of years (especially here lately), and, friends, I want you to know that I'm sorry. I want you to know that even when you don't hear from me, on time or at all, I'm thinking of you. I want you to know that my intentions are good, my love still fierce, and that I in no way mean to make excuses for my slacking. If I come across as self centered while I'm throwing my blogging pity parties, know that I'm not as entirely self-centered as I might sound, because I really do consciously try often to center myself around my love for you, friends, and for my family. Thank you for all of your support, your wisdom, your kindness, for inspiration and celebration and tips, for holding my mental hand, making me laugh, setting me straight. If I were you I'd be thoroughly fed up with hearing about my fatigue, but it does account for my inability to keep track of what day it is, and while that is not an excuse, it does come with a huge "I'm sorry." Everyone who reads here regularly, I want you to know you are appreciated, you are special, you are in my thoughts. I celebrate your joy, empathize with your challenges, and am so sorry for you grief.

And now that I've said all that to you here, I know I am ready to say something like it to N tomorrow. With her I have some serious catching up to do.

How to Win Friends and Influence People, The Autism Version

The first week or two of kindergarten, our son's teacher remarked with surprise that kids liked him. She said, "He has friends! The kids I've had with autism usually didn't have any friends."

That last sentence depressed the heck out of me, and while the preceding ones might sound like cause for happiness, I had been through this before. Our boy, cute and charming at his best, likes to start strong and then slowly burn his bridges.

Can you smell the smoke? Whoooohheeee. We thought the wildfires got out of control in these parts.

So. Kindergarten. The school wants us to have a class talk about autism. They want to read the children a book about accepting the friend with autism. It's a great book, to be honest, and I like it a lot, but I'm so not ready. The question, of course, is whether our Rooster is ready. All I know is that things are not going so well.

The little boy Rooster clicked with best the first weeks of school now says the Roo is mean, and that boy's parents agreed, vocally, on the yard before school one day in front of classmates and other parents.

And today? Today was a jab to the heart. Today my husband was home sick, so he couldn't take Roo to school, meaning Roo had to come with me to drop his sister off first at his old school before I could take him. "Mommy?" he says to me when he realizes we're leaving her there and he now needs to go to his new school across the street. "Mommy, I'm suffering." He has never used that word in front of me before, and when I ask him why he suffers, he says, "I want to go to THIS school, not my new school." I tell him he graduated from his little sister's school by finishing preschool there (knowing he knows better, but it was the best I could do in the moment) and that his new kindergarten is the right place for him now that he is five. He stares at his feet and says, "I'm ungrateful at my new school." Then, as I walk him to his line, the two children already in place there notice us coming and visibly slump. "Oh, no," they lament, "here he comes. I hope he doesn't push me today. Rooster, don't stand next to me, I don't like how you poke!"

Friends. We know that the Rooster wants friends, likes friends. He does not know how to try to have them, though. He hears these children speak to him and he thinks that they are attacking him; he doesn't recognize in any way his part in building their defensiveness toward him. And so when they greet him with suspicion and fatigue, his own defenses flare, and he starts off his day by yelling at them, making faces, living up to the worst of their expectations. The vicious cycle in every way.

I asked him today, "What does it feel like to have friends?" He said, "It feels loving." I said, "Do you have friends at school?" He answered no, because those kids are mean.

They are not mean. Nor is my son. By the time I left him in line, I'd smoothed things over, for the moment, through intricate social maneuvering, through distracting, deflecting, through humor. They are ALL good kids, cute kids, special kids. They are so LITTLE, yet suddenly they are also getting so big, too.

We aren't ready to give our Rooster the word Autism yet. And so I'm not ready yet for the class to read the book about it yet either. Instead, I decided to write a letter to the parents. I've never tried to keep our diagnosis a secret from anyone, except I guess maybe in a way from the Rooster himself. I realize by telling the parents in the class makes me run the risk that the kids will use the word against him at some point, so maybe it's time to talk to him directly. J and I will be wrestling this for a while, I think, but we know that you can't unring a bell, and so we're proceeding with caution.

Today J has been reading about the Circle of Friends approach, wondering if it works in kindergarten, and I've put in calls to our ABA team. We've started accumulating social stories, video resources, and joke books for Roo to give him a social "in." I've reached out to the parents of the boy who thinks Roo is mean, inviting them to come pumpkin shopping this weekend, but the response I got did not inspire hope. I've been reading Theory of Mind articles, and I'm talking to my boy about his "inner voice," and how to be a good friend. We're volunteering in every way we can at Roo's new school, and I'm a room parent. We're donating to fundraisers and selling wrapping paper and trying to build some community.

In other words, we're desperately scrambling, we're running scared, we're pulling out all the stops. We're trying to win friends and influence people, with autism on board. This, my friends, is harder than potty training. And, like potty training, it's messy. And we are experiencing many unpleasant accidents. But we finally have the potty training thing mostly mastered, so maybe there is some hope for us yet. Do you think so?

Good Night

Okay, so you know how I whine endlessly about being soooo verrrry tired? Well, as overly prone to apologies as I am known to be (just ask Pixie Mama, I am a broken record of "sorry"), I feel kind of justified in the tired department because, on top of working very hard at work and at home, we never seem to actually sleep or even really rest.

But here is the thing.

Every once in a great long while, we have a day that approaches the reasonable mark for work levels and endurability. Like today, for instance --- today felt kind of human, maybe just a tad like regular life.

These rare days are something so coveted and treasured it terrifies me to speak of them. But. They are the days when the tired cranks up to its highest level, and I can barely stand. I don't mean this metaphorically.

I know it doesn't make any sense, but I felt like someone glued me to my chair at the dinner table tonight, and this monsoon of physical fatigue bordering on collapse happens like this every time we have this (rare) tolerably fair kind of a day.

So if this sounds just like my usual complaining, it isn't. It's me thinking about what it means. Why when things feel just a tick better do I feel ten times more tired?

I think it's because I can. I think it's because I spend so many days holding my breath while weight lifting that when I finally exhale and release, my muscles know now they can go limp.

So I'm not complaining about my tired tonight. It's a welcome kind of tired.

Tonight instead of refusing to talk to his ABA therapist, Rooster called out to him, "Excuse, me, JT. May you please sit down and have conversation?" He felt extra motivated to earn his rewards -- 10 minutes of TV time and a walk through the neighborhood's spooky Halloween displays -- and he knows "volleying" is the only way to get them. He answered questions about school (recess was the best part, because he liked playing with the toys), and he asked for clarification when he didn't understand (what does "least favorite?" mean -- oh, that would be his lunch that mommy made "wrong").

Tonight Rooster had all his homework done before I picked him up. (He has a new aide after school --- his third in a month.)

Tonight the Rooster asked questions. He practiced tying his shoes. He ate a good dinner.

I have yawned seven times writing this. My arms feel made of lead. My eyes are watering because they want to shut. I am going to sign off, log off, slack off, and go to sleep. It's 8:26. I'm spent. But that's cool, because I'm going to bed. Because I can. And that's what is really cool. Do you know what I mean?

Do you ever feel like this?

G'night....

Eskimo Kisses from Los Angeles

Do I live in Alaska or what? Because my days feel long and dark lately.

But I have decided that the best cure for my current funk is to list my best good news:

1. My son tied his shoes tonight for the first time. It took three adults 20 minutes to talk him through it, and talk him out of his melt downs, but it was well worth it. We cheered like we were in Rio when the Olympic committee announced the location for 2012.
2. J came home a few minutes early tonight. Because of that and it being Friday (no lunches to pack, no homework to do, no rush for punctual bedtimes), Peaches and I got the rare opportunity to play a game together -- Candyland! -- on a weeknight.
3. We have a new sub at school. Not just a sub, but a former teacher. We taught across the hall from one another for several years before she moved back East for about the last decade or so. And while I was teaching fifth grade, I taught her son. He was the first boy I ever knew with Asperger's. In fact, before him, I'd never heard of it. I have thought of him, and his mom, many times in the last two years. And now his mom has come back to sub where I work. We had LOTS to talk about. It is great to catch up with K's mom and have someone who gets it back in the community.
4. I have some exciting projects going on at work.
5. The Redskins won their last game.
6. I have 346 points in Scramble.
7. I tried really hard to make it to 10, but I'll settle for this. It's chilly here in Alaska and time for me to hunker down in my parka and conserve energy. See you when I thaw out.

Isn't it Ironic

Well, there is no fooling you, smart readers.
Pretty much everyone saw through my irony; Peaches has never met a cookie she didn't like, and if she expressed a preference instead for my salad, my blog would end, because I'd have a heart attack. The rest of the notable and quotable dialogue was lifted directly from the mouths of babes.

I still have nothing I can bear to write about from our daily existence. I. Feel. Low. Having experienced the details of September and the start of October live and in person, I don't have enough left in me to relive them through the narrative. And I haven't accumulated enough one liners for another whole Notable and Quotable. (The only new one I have worth repeating is that, today, while home sick for the trillionth time, Rooster hugged me and said, "Mommy? I love your bones.")

So I'm not sure what I'm doing here, really, without so much as a seed or a germ or any other beginning place; I guess it's just this is where I go. This is how I hang. I need my blog fix. Where else would I be? Where else am I?

So here is me riffing free style; I feel some VERY, VERY, VERY bad poetry or something like it coming on, but trust me when I say it beats telling you what we've been doing...(I suggest you now head back to your aggregator and find a better blog to read for the time being)...

I am too judgmental
Of her and him
That lady who cut it too close in the boxy black car this morning --
What was SHE thinking? Looked like thinking probably isn't her thing if you want to know my opinion
And that MOTHER in the meeting, oh I have her pegged;
You will not catch me sitting within ten feet,
And speaking of ten feet, that really tall guy in the elevator made me want to get off a floor earlier than necessary... creepy.
He should take a class in smiling.
Classes? I could recommend a few.
For the doctor who knows jack
and the know-it-all neighbor who never heard of etiquette,
the sitter who seems barely literate,
my politicians,
"entertainers,"
even my mother ---
I have a prescription, a solution, an improvement, a plan for their evolution...
a judgment.
No one escapes.
But sometimes I think about the chick in the boxy car.
I think what if she just got a diagnosis for someone she loves?
I could barely find the road some days.
I wonder if that mom in my meeting might be parenting all by herself --
my greatest fear --
and if the elevator guy thought actually I was the scary one, pushing the buttons like they might launch missiles and carrying two giant bags along with the chip on my shoulder.
I've been thinking that maybe I need to cut my doctors, my neighbors, my mom some slack.
Of course, the politicians we know on an objective and absolute level to be categorically and undeniably morally bankrupt, but besides the John Edwardses of the world (and there are far too many), the only person who deserves my cantankerous contempt are really judgmental people.
We get on my nerves more than anything.

Notable and Quotable 2.0, the Interactive Version

Since I am still feeling kind of underground about the new school year and kindergarten, and unable to process it let alone write about it, I thought I'd do a notable and quotable. But since I'm also feeling a little lonely, missing people, what do you say we make a little game of it? ONE of the scenarios below I completely made up. Which one? You tell me. And tell me how you're doing, if you wouldn't mind, because I miss you. Now, let the game begin:

Reminder: Peaches, NT, is three. Rooster, who has autism, is five.

A. Peaches: Our house is old. Can you buy me a new one?

B. Peaches: "Mommy, why did you and daddy have kids?"

C. Rooster: "I say, Bah Humbug. Do you hear me? Bah humbug."

D. Peaches (40 minutes after being tucked in): "MOOMMMMMMY! MOOOOMMMMMY! MMMMMOOOMMMMY! Come here! DADDDDY! Someone come quick! Pull my blanket back up! IT SLIPPED OFF!"

E. Rooster: "Will you please help me hunt for slugs?"

F. Peaches: "Are you happy at me, mommy?"

G. Rooster: "When you die it's going to be just us and daddy."

H. Peaches (about her best friend for the last 2 years): "Mommy, I love Ian. I want him to be in my family. Mommy, at night, when I'm at home, I think about him." (Insert meaningful pause and deep sigh. "I think about him."

I. Rooster: "Ebenezer Scrooge woke up in the inky darkness and saw ghostesess. They showed him a big TV. And on it was HIM!"

J. Peaches: "The queen spoke to him and he said, 'Yes, my highnesses.'"

K. Rooster: "Mommy, mommy! Mommy, I'm learning to READ!!!!!"

L. Peaches: "No more cookies, mommy. I'm all done. Can I have some of your salad?"

Medical perspective

Today, J and I became indignant about our son's health care, or lack thereof, and I flew into my fix-it-frenzy, emails flying. Today I felt sorely neglected by pediatricians, and that makes me hotly indignant.

Today, though, I read what it's like to be indigent. Almost sounds the same? Much worse.

Once again, perspective smacks the Rooster's Mama, who OFTEN needs that kind of smacking.

Please read a powerful blog post written by a dear friend of mine who, though younger than I am, has always taught me things. (Love you, Gwyn.)

http://gwynethsadventures.blogspot.com/2009/09/day-in-life.html

They

I appreciate our ABA person. He came into our lives, into our home, going on about a year ago now I think, though I can't really remember life before ABA. Having him here kind of reminds me of the brief period in which I had a personal trainer: I dreaded the arrival of my trainer, and deeply appreciated the experience afterward because I knew I could feel the benefits. However, when my trainer moved to Australia, I gave a huge sigh of relief. By contrast, I dread the end of ABA, and I know I'll hate so see JT go. Honestly, he feels a little like family now.

JT has pulled my kids in the wagon around the block with me so many times I finally started to realize the neighbors might suspect me of polygamy. He reads to both my kids, plays with them, has carried them out of my car when they were sleeping, has fed them, has given many high fives and knuckle bumps. He disciplines them. He is super nanny plus some.

JT has a son, too, about the age of Peaches. We talk about our kids.

Tonight, Rooster had a pretty major meltdown when we got home and met JT for ABA. Rooster became aggressive and JT became all business, enforcing the rules just as I wanted him to, but it hurt to watch nonetheless. JT asked me, "Are you okay?" I assured him I was, but we have kind of a standard dialogue every so often in which I ask him for a pep talk, and so I said, "Can you just humor me and give a 'Things will get better' talk?"

JT always complies with this kind of ridiculous request while still walking the "I make no promises" line. He finesses it well usually. Tonight he said something like, "Sure. Some things will definitely get better, because they get better as they grow. They mature, and they get more control of themselves. They become more independent, and that will help. Other things will be difficult, sure, but some things will get better."

I had managed through Rooster's screaming, his thrashing, his food throwing, his whole meltdown, and the aftermath of tears. I had managed while tending Peaches, unpacking lunch boxes, making dinner, repacking lunch boxes, cleaning smashed banana from the floor. But tonight sweet JT's well meaning speech did me in.

Of course, it was the "they." He said it at least a half dozen times, and with each one I felt like something bit me. For a few times I tried to tell myself he meant "kids" by "they." But he didn't mean kids. He didn't mean his kid. His kid and my kid don't fit into the same pronoun.

JT loves my Rooster. I know he does. And Rooster has kind of a love/hate thing going on for JT. It's all kind of familial. Except for the they.

Hey, I know. But still.

On the Other Side

In 15+ years working in education, I've often lauded the value of switching "to the other side of the desk" -- meaning, I think teachers ought to take classes and pay attention to what if feels like for students, to better inform teaching practices, to build empathy, to have "aha" moments.

Perspective. Forever it seems like I'm learning new lessons about perspective. Apparently I'm a slow learner on this topic, but an avid and engaged one at least, fascinated by the topic. Most of you readers learn much faster than I do, and I turn to you for the lessons I crave, so perhaps you will find zero enlightenment here. But on the off chance I have something to share with you, I'm going to recount my most recent lessons learned on the other side of the whole mother-daughter thing.

So I took Peaches with me back East. Last weekend, we celebrated my 20th high school reunion, the arrival of my dear old friend's baby boy Noah, and my mother's 65th birthday and upcoming retirement. For this trip, the mother in me planned, organized, arranged, packed, purchased, drove, flew, coordinated, carried, clean, cajoled, coerced, comforted, apologized, pleaded, interpreted, explained, commanded, reprimanded, disciplined, educated, entertained and medicated in order to schlep an allergic three year old on a trip that lasted 45 hours and covered 3,000 miles, 4 airplanes, two cars, several houses, and almost NO SLEEP. The trip? Well worth it to me, full of meaning, and lots of fun. But I confess to you that a week later I am still very worn out, physically still limping along, yawning, yawning. You know I'm not stoic! I am not mother of the year. I complain. I find motherhood, and my two kids in particular, challenging. I sometimes feel like I'm shouting into a black hole.

Now, how about the flip side?

I flew the coop early from my mother's home, and headed West in 1993, fresh out of college. For 16 years, my mother has called me before my trips to visit her, reminding me what she wanted me to pack, cautioning me not to bring "that ratty sweater I hate and those God awful shoes..." Different sweater and shoes each time, but the same theme -- I am not the fashionista daughter my mother wanted. Each time I arrive, she reaches in her purse at some point, and pretends she is about to apply lipstick. Then, she looks at the tube, frowns, and says, "Damn, I bought the wrong color. Oh well, you can have it -- it'll be great with your complexion!" It is almost always Toast of New York. I always complain that I don't wear makeup, but then I put it on to please (or silence) her. She drives me to the hair salon, and though it is actually walking distance, she drives the long way so she can remind me again how much nicer I would look if I just cut it "a few inches shorter this time."

On this trip, things were different. I brought along with me the fashionista daughter my mother always wanted -- Peaches. She merrily acquiesced to giving countless fashion shows. She trilled in ecstasy at all the new clothes waiting for her. She twirled. She applied lip(chap)stick artfully, often. Yes, she told anyone, you can "do" my hair!

No one offered me Toast of New York lipstick.

And you know what happened, right?
I missed it.

I didn't feel jealous not even a drop. Oh, I loved seeing Peaches and Grandma in their element. I loved having the pressure off me to be someone I'm not. I loved wearing jeans and not feeling like the disappointment of the ages. No one kvetched about my hair.

But I realized that I like my mother's attention, too.
Oh, I still got attention. In lots of ways. It was GOOD for me to realized I missed the Toast of New York, that's what I'm saying. It was a both-sides-of-the-desk good epiphany. I needed it.

At one point, I'm standing in the shower while Peaches plays with Grandma and Grandpa's dog, Grandpa watches a little of The Game, and Grandma fusses around the kitchen. I realize I forgot to borrow a razor (and I couldn't pack one since we only did carry-on). I know where one is, though; I know I can grab a towel, make a dash, get a razor. I also know that I can call out, "Mommmmm! MOM!" If I do this, I will sound just like Rooster and Peaches so often do. I do not wish to sound like them. I do not like it when they do that. It makes me grumpy. I am standing there, staring at my hairy calves, 38 years old and NOT lazy (though very TIRED), and I am sure you know that of course I call out. My mom doesn't grumble and snarl, "WHAT?!!!!! WHAT do you WANT?!" She just brings me a razor. She might even be thinking (though I doubt it), "Once a year, it's kinda nice to be shouted to for this or that when my kid comes to visit!"

No deep, surprising revelations here, but for a slow learner like me, the good lessons on the other side of the desk -- er, shower? -- include these:

• Things I do for my kids now that they seem to resent or find annoying will some day possibly be appreciated.
• Things my kids do that annoy me now, I will probably some day miss.
• Attention from your mother feels good. Everyone needs some.
• The rituals and scripts of each family weave into our identities. They have layers of value and meaning.
• Grandmas are wonderful.

Oh, wait, I ALWAYS knew that last one, always hold it fast in my heart. I should close by saying that this, my first trip home since my grandma's funeral, made me miss her very, very, very much. It also made me feel her presence as well as her absence, because she is such an integral part of who I am. I think she was whispering the lessons of this trip in my ear. As much as Peaches is the fashionista daughter my mother never had, I was the school girl daughter for my grandma who took pride in the same bookishness that made my mom a little queasy. But my Grandma, too, loved fashion, and how dearly she would have treasured seeing Peaches strut around in her fancy skirts on this trip. Peaches has her twinkle.

Smelling the Roses

I'm NOT saying that I'm optimistic about kindergarten. THAT would be foolhardy. I think the last time I was optimistic, Bill Clinton (and his wife) had this good idea about reforming health care...

Today, my son's first day in kindergarten, his first day in public school, had plenty of challenges. Plenty more await us. ALL I am saying is that on this one day, I could see the good side of most of the bad sides.

We started our day by parking FAR away from the Rooster's school, because the only close spaces were right by the school that he no longer can call his own, and while I'm glad he's moving on, for him it remains a bitter pill. Good side of the long schlep? We walked along the four blocks with many other families, and I felt a sense of belonging to the new community. We met people, we smiled, we hadn't yet burned bridges. When we got to the auditorium, we quickly found the class assignment list, and the Roo is not in the classroom I've heard so many great things about. At first, this bummed me out. The good side, though? Later, the teacher explained that they expect to shuffle kids around the first two weeks. At least five kids can expect to change rooms. Plus, while the teacher didn't overly impress, the aide assigned to Rooster went out of her way to welcome me and put me at ease. She knew his file, assured me she'd made herself well aware of his allergies, that she's done this all many times before.

Parents spent the first hour or so of the day in the room getting the lay of the land. One little boy who seemed to be missing a parent cried heavy, hiccuping sobs in the corner while the teacher talked. Seeing that the teacher offered him little empathy, my Roo took it upon himself to approach the boy. I couldn't reach Roo, or hear what he said, but when it had no consoling impact, he took things up a notch, and reached out and hugged the boy. Seeming to calm him a little, Roo finally went all out and planted a kiss on his cheek! The boy didn't like that, pulled away, and finally Roo had had enough. "Fine, then," he loudly announced, "but you are crying too loud and hurting my ears!" This got the teacher's attention, and she asked, "Whose child is this?" She meant the sad boy, not the Roo; she wanted someone to take the boy and get him quiet, and that made me worry a little bit about her empathy level. The good news? Clearly, autism or no, empathy is not lacking in my little guy. We have to master appropriateness and mood regulation, but surely he's A-okay with empathy, at least some of the time.

After school, I picked the boy up and helped transition him for the first time to after care. When I excitedly asked about his day, he described it as, "Not too good." Why? He said, "Today I felt dumb."

Well, OUCH. That? That's bad. How can that have an upside? Because a year ago, and certainly before a year ago, I could not have imagined my son expressing his emotions to me in that articulate way. They might not be the emotions I hoped for, but I couldn't be more proud of his language. We will address the feeling dumb part for sure, now that we know about it.

On the way to after care, which is run by the same people who ran his summer camp, we crossed paths with several children Roo recognized. A couple called out happily, "It's ROOSTER! I missed you!" One let Roo give her a big hug. He had nothing but smiles for the familiar kids and adults in after care, and he also has an aide there as well.

In theory, I will be out of town for the next two days. I didn't mean the calendar to work out this way, and it's hard to miss his second and third days of school. The good side? Daddy will get a turn to get a feel for the new school, having missed the first day to take Peaches to a doctor's appointment.

Yeah, I'm still PLENTY worried about kindergarten. But today is just the first day, so I'm pacing myself. And along the way, I'm smelling a few roses.

Trichotillomania Help?

So a friend of a friend is asking for help. Anyone know anything about trichotillomania? Looking for blogs, encouragement, etc. to ease her panic.

Packing it In

Oh, I guess in theory right now I should be packing things, all kinds of things, but I'm not. In theory Peaches and I head East in the wee hours before dawn on Thursday, and in theory J and I take Rooster to his first day of kindergarten tomorrow morning. You know how I roll, though, friends, and I showed myself to be a foolish gambler when mere hours ago I spoke with enthusiasm for the upcoming adventures, so now of course my little Peach has suddenly spiked a fever.

I am, as rooster likes to script (from The Moffats audiobook), GOBSMACKED. I am not packing a suitcase. I am not writing notes to the kindergarten teacher and the AAA (aide). Can't. Stuck. Stymied. Like the word petrified, like something pulled from the La Brea tar pits. Vigilantly sitting up waiting to see if the newly tucked in girl coughs, cries. Steeling compulsive peeks at the clock until the next dose of Tylenol in two more hours. As usual, the only thing I am able to do when I'm in this state is this. Blogging. Here I Am and Here. I. Am. I have no idea how to wait patiently as time passes, I only know how to pace back and forth in writing.

So, rather than dwell (on whether Peaches has the flu, if she got sick from eating food she'd dropped on the floor at a fast food restaurant on the way home from my inlaws, how we'll divide up her care and Rooster's first day at kindergarten and WORK, if we'll be able to travel, whether we should have gotten Roo the flu shot during our last visit to the doc when he was already under the weather, if I can even contemplate flying East alone or missing my reunion/mother's 65th birthday/dearest friend's new baby, why the deities screw around with me, and how dumb I was not to get the flight insurance for the first time ever), I blog.

I blog.

To distract myself, here is a bit of noteable and quotable for you:

Me: Peaches, do you know who is my very favorite girl in the whole wide world?
Peaches: Who?
Me: (touching her with my index finger) You are.
Peaches: You know who is my favorite girl?
Me: Who?
Peaches: (touching me with her index finger)AMIE!

Peaches: Even though I'm mean, do you still love me?

Me (to Rooster): How much do I love you?
Rooster: So much.
Me: For how long?
Rooster: Forever.
Me: Who loves you more than I do?
Rooster: Me! I love me more than you do!
Me: NOBODY loves you MORE than I do, Roo.
Rooster: That's right! Nobody!

Okay, whew. That was good for me. I think now I'll pretend to try look like someone deeply contemplating packing up for a fresh start at a new school with new teachers, new shadows, and a roostery kindergarten boy, and for a remote hope for a trip East with a Peachy girl. But actually I'll probably see you here again in about five minutes.