Sunday, October 18, 2009

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?! :-)

Saturday, October 17, 2009

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.

Friday, October 16, 2009


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.

Thursday, October 15, 2009

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?

Monday, October 12, 2009

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?


Friday, October 9, 2009

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.

Tuesday, October 6, 2009

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,
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.