To Capitalize or Not

Peeps, I need your input.
I really need your input. Calling all reasonable inputters.
So, I have a hard time leaving my house for, like, an hour. I miss baby showers, retirement parties, well, you know... everything.
And now I am going to the EAST COAST for work at the end of June.
I need to spend at least three nights in D.C. for a conference, plus the travel days...
And I can't decide what to do.

Choice 1
I can go with just my coworker, who happens to be a dear friend. While there, I can try as hard as possible to meet up with long lost friends and dear old college buddies who live in the area. It'll be fun. For J and the kids, it will be a monumental struggle, and I'll be worried about them. I've gone away twice before. The first time, J forgot to pick them up at daycare for over an hour and was charged $400, among other snafus. The second time, they all got stomach flu and relied heavily on my inlaws for physical and mental relief.

Choice 2
I can bring J and the kids along this time and make a vacation out of it too. My mom and stepdad, who live about 5 hours south, can meet us there, as it has been WAY too long between visits, and this way we won't have to fly to see them, which is more than double as hard (two more expensive flights with a long layover in between, followed by an hour drive across the state line). My mom and stepdad can help J out with the kids while my coworker and I attend the conference during the day, and we can all hang out each evening. But we'll miss a couple days of therapies, and we'll have to travel with the challenges of the ism... searching for gfcf foods, dealing with time change, sleep challenges, etc.

I am torn. Mostly, I want all of us to go, but I also remember how hard it was when we did it two years ago. And yet I don't want to be "grounded" forever by autism. The Rooster has grown so much since then, and he would probably have fun on his travels... On the other hand, the whole thing sounds crazy.

I guess the third choice would be to tell work that I just can't go. But D.C. is my favorite place, filled with people I want to see, and this is the most important conference for people in my position.

I'm so conflicted. I know there are way bigger and more important problems, and you are all busy, but I feel like I've gotta toss it out there just in case: Anyone have wisdom for me?

Mythology

We all buy into myths sometimes, and while not all myths harm us, some of the ones I fall for cause me grief of my own making, grief I want to shed. I am going to try to remember and learn, reframe and redirect, change my prism, breathe, accept. Do you buy into false myths too? Share yours if you want to; here are mine:

- Everyone else's families are happier than mine.
- There are heroes out there waiting to make it all better.
- If only this or that happens, THEN things will be better.
- If I worry about something enough or the right way, I can prevent it from happening.
- If I am happy, I will be punished.
- I need to apologize for my son's autism.
- Other people are perfect, but I am not good enough.
- My husband is out of my league.
- I can't handle the hand I've been dealt.

By the way, that lazy, irresponsible girl who never could manage to show up to work to be my rooster's shadow? That girl without whom he couldn't go to school? The one with the attitude and the smirk who had car troubles today right after feeling under the weather right after having strep right after having a bad back right after having a migraine right after having a car accident right after having an important meeting right after the stomach bug right after some other lie? I never have to see her again. And I am glad. If we have to hire a sitter at $150 a day (no, that doesn't seem affordable to us; who does have room in their budget for that?) for the last few weeks of school, I will take that over any more of HER. Today was the last day I drove my child to school, watched him start a good day, only to get her lame excuse, and have to work out with my husband which of us would miss work. They say they are sending someone reliable now, but the bridges are burned, and I hold little hope, and am ready to pull the plug if I need to, because it should not have taken me going postal mama bear for an organization that works with autistic children to step up to the plate. He is a little boy, and he deserves to go to school. She not only didn't help him, she was a detriment to our family, to my sanity, to the Rooster's stability through her inconsistency and her flakiness. She needs to go back to her previous Starbucks job where the only thing that happens when she's out is someone else makes the latte. The thing that bothers me most? They wouldn't even say they are firing her. They are just reassigning her chronically absent butt to some other poor kid somewhere. Shame, shame.

In a perfect world, she and her superiors would learn a lesson from this. But the world is not perfect. That is another myth, but not one that has ever fooled me.

Chasing Shadows

This is the message I shouldn't/probably won't/am not allowed by my husband to leave at the agency where we get our shadow, without whom my son cannot attend school, and many thanks for letting me get it out of my system here and now so I don't die of toxemia or something:

Them: Thank you for calling Shadows Are Us, leave a message and we'll get back to you a day late and a dollar short with a little attitude.

BEEP.

Me: Hello, this is Rooster's mom calling. You remember me, I'm the mom you kept promising to get back to for months and months and then I left you the message about how you'd hear from my attorney? And then you sent that guy Nate who didn't pay any more attention to the the teachers in the classroom than the four year olds did? And then this year you assigned us a recent college graduate whose job experience at Starbucks probably gave her the impression its not a big deal to call in sick every other Friday, most Mondays, and on alternate days that end in y. But this year it has been a big deal for our family. And so I called to tell you something I think you'll find pretty interesting. I sit in A LOT of waiting rooms. Do you know what special needs parents do with those countless hours in waiting rooms? We help each other. I have recommended to other parents my OT, my PT, some decent doctors, and countless products, books, and web sites. I have never once recommended your agency, not for its behaviorist services and not for its speech services. And you know what? I never will. The sub you sent today? She was great. Fantastic. The problem is, it's the 17th or 18th time my son's shadow has needed a sub this year. And it's the first time you ever sent a sub. We need yet another sub tomorrow, and you don't have one for us. So I probably will miss work. Again. Do you know that in 8 years teaching fifth grade I didn't miss as many days as our shadow has missed in the last nine months? And do you know how rude the people are at your agency? Kinda like this voice mail. Rude. But what comes around goes around. Thanks, I know you think you do us a world of good. I hope someday you need a world of good your own self. Then you will GET IT. Got it?

Loving

PixieMama, I hope you don't mind too much if I make it a meme?

Loving...
the weather of romance novels in LA today
a quilt and pillowcase made by hand with love
the splurge of a babysitter to go see my second movie in five years
hugs
phone calls of support
my bloggy friends
losing a few pounds
a new baby in a beautiful home with C and D
voodoo dolls from New Orleans
backup plans
writing
hope
good news from friends
a cleaned up house
rooster, peaches, their daddy
ideas
change

thanks, Pixie -- and love!

They Come in Threes?

My first big crisis came when my thieving and adulterous father fled the country with the Feds on his tail, leaving my mother, brother and me without our home, our bank accounts, or answers, and I never saw him again. I was ten, angst-ridden, angry, depressed. It turned out to be a big improvement over actually having him, a raging alcoholic, raise us, but it didn't seem like much bright side at the time in those years of slow regrouping.

Then, in my twenties, came the second depression, when I married under duress and quickly annulled it. The man I'd trusted for five years confessed his cheating ways two nights before our scheduled wedding, ripping off some serious scabs and making me question my judgment, my past, my future. Thank goodness it didn't work out, because then I met J, and found out what it means to fall in love and build a solid relationship, but first I had to lick some gnarly wounds in those years of slow regrouping. It was then that I wrote a poem that I reread often. It's not a good poem, it's melodramatic and adolescent, but it reminds me now, in this, my third crisis, that as hard as things get, these things I have now comprised my hopes and dreams. I have what I wanted. I have it PLUS autism, but which is bigger, autism or me? I read this poem, and I can pull myself back from the precipice a millimeter or two, and try to accept my third phase of slow regrouping.

Forgive the bad poetry, but here it is, my reminder of the power of words, reflection, hopes, dreams, and self talk, in the journey and quest for more joy:

Journey (circa 1997?)

before I go
there will be more pain
I know there will be more pain before I go

others will go first
taking pieces of me
pieces I need
pieces I cherish
they will leave me aching
they will leave me to pay the steep fare
for their journey away from me

before I go
there will be more pain

pains that sear, burn, sting, throb
pains that shoot
and spread
and torture my fragile flesh
pains that humiliate

before I go
there will be more pain

goings and comings and sunderings
lovers that leave and friendships that fade
and longings unfulfilled

before I go
there will be more pain

I will stand alone
and I will stumble
I will err and I will wrong
and I will change, and not always for the better
before I go
and that is certain

but will there be more joy before I go?

will there be
wedding days
and sacred vows
and unconditional love both given and received?

will there be babies
healthy, strong and mine all mine
to raise and love and teach and tickle?

will there be snapshots taken and scrapbooks filled
and will there be more joy?

before I go

Venting for Sanity

Don't read this one. We all have our own lists and I should just shut up. I have no idea why putting this out there serves as my only chance for a release valve, but it does, and it is, and so I write:

Today I needed to sort out 600 scattered jpegs for 60 sixth graders behind on an important project. Today I needed to interview 120 students on my new video equipment to create a digital thank you for a major recording star, who happened to drop into my classroom during the production. Today I needed to shoot bits and edit a short segment for our school community service organization; this involved first graders dressed like sea cucumbers, and little boys wearing robot masks. Today the fifth grade needed my help with their research projects, now into the crucial publishing phase after working diligently with my support on developing inferential questions, conducting research in the library as well as online and via interviews, note taking, and citing sources. But today was the rooster's first day back to school in a while, and he's on antibiotics, and, as I think you will recall, I had zero (zip, zilch, nada) hope of him making through an entire day, but I hoped upon hope I'd at least have the bulk of it, including the tribute to the singing star, under my belt before he got bounced out of school.

I finished the 120 interviews, along with a little of this, a little of that, and none of the time I'd hoped to have for the fifth grade, by 2:40. At 2:45 I got the call. "Our boy hit his friend." To be more accurate, my boy hit the child of the woman who wanted him expelled when he spit at her a couple months back; their last name is one I expect many of you would know, and while you should never, ever hit anyone, I do wish my son would especially and immediately stop hitting people with foundations named for them who donate impressively to the school and who have lost their patience (perhaps justifiably) with his aggression.

"I'll be right there." I gathered him up, tried to have something akin to a useful conversation about hands not being for hitting, arranged by fantastic luck to have his amazing occasional sitter pick him up, and managed to make some headway on the jpegs and the sea cucumbers before picking up Peaches to head back home by way of the grocery store.

Tomorrow I have a half day to try to catch up on the outstanding business of today, as school closes at NOON. That means that if the rooster can hold it together for four hours, I need to straighten out only a few hundred jpegs and put the trickiest-to-edit parts into the community service video to show Monday. I won't be able to begin to edit the 120 thank yous, though, because while I have all this to carry forward from today, tomorrow's own agenda includes a meeting with my boss, giving a stern cyber-bullying talk to some precocious fourth graders, turning in overdue time sheets, and filling out some neglected POs by noon. As the week draws to a close, my outstanding rooster business also includes the OT form that I need to fax to the school district, the arrangements for a summer camp shadow, the ABA log, and ABA tomorrow night. But the thing is that I don't know if the rooster CAN manage for a few hours tomorrow. It's all piling up, it's all toppling backward on us, we're all drowning. If I get the call tomorrow before noon, there is no place to move everything to on subsequent calendar pages... next week at work starts the slippery slide to Open House, graduation, summer programs... Next week in the land of roostery autism includes twice to OT, four nights of ABA, a full functional re-eval, observation by the inclusion specialist, a visit from the Pre-K-Itinerant Teacher, restocking the gfcf cupboards, and the slippery slope to his fifth birthday, new blood work, and an increased ABA schedule.

My mother wants to know when we can come for a visit. It's just 2 flights and a 70 mile drive to get to her house 3,000 miles away. They have never heard of gfcf in my hometown, where a good many meals come with a side of biscuits, and my mother drives an hour across the state line to get to a decent grocery store. I really, really, really want to go. I want my mommy. And my stepdad. But at the end of the 10 travel hours with my children, I will need to be hospitalized.

There is some worse stuff I haven't been writing about too because it's just too much, and it feels disloyal. We all have stuff like that, too, don't we?

I would like to find Saddam Hussein's old cave and make it my own.

I hope nobody read this. But I do feel a few pounds lighter.

How Am I?

Bright Siders, please skip ahead. I'll put ** where you should look for my attempts at a positive focus. Those with a high tolerance for my pity partying ways, you just stick with me right here, okay? Because I'm going to give an honest answer to, "How are you?" And anyone with any standards at all would be sorry they asked.

Well, I opened my mouth last week and said the rooster made it through a week at school. So far this week, he's made it through a half a day. He had a bad cold, maybe infection, as he has for about 4 out of the last 5 years. Teachers attribute his chaotic behavior yesterday to not feeling well (though I think maybe AUTISM had a wee bit to do with it) and so I schlepped him off to the gajillionth doctor on the hottest day of the year at about noon in a building being repossessed -- er, renovated? -- to look like a third world country currently with no nearby parking, though they tell me that these are just early days in a chic new look and efficient layout, and in order to take the only appointment they had to offer at this beacon of cutting edge medicine, rooster missed nap, ate lunch in the car, and nearly drove the office staff to self medicate. He screamed, spit, threw tows, rolled around on the floor under the doctor's chair, ran up and down the hall, and made animal sounds. The doc "hmmmmmeedd" and "Reeeeealllyy?ed" and said, as I've heard countless times, "I think he just has a cold, blah blah, surprised that he stays so runny and gross, blah blah, should run more tests, blah blah, immunity issues, blah blah, here's another antibiotic, blah blah." I reminded him that the teachers think the rooster gets crazy when he's sick, but I think he gets crazy on antibiotics, but I agreed to a 10 day dose of amoxicillan, AGAIN. He's been perseverative and barely tolerable -- though I love him dearly -- ever since. My nerves can not take much more of his most stuck record, the current story he tells about mommy on the red carpet with the fancy red dress and the cameras clicking and getting the trophy... the kid seems to think I am Miley Cyrus, and I can assure you emphatically that I am not. Whenever I try to redirect the conversation, he wails, falls to the floor, flails angrily. I finally distracted him for a while by pretending to be a cat. It was no better, but it was different, and for a few minutes, kept me less insane. Then he started pouncing on me with a stuffed mouse and some nasty old string and repeatedly insisting I meow, and I wanted to be Miley again.

I missed a half day of work Monday, then my husband missed a full day, then we paid a fortune to a sitter today, missing OT and ABA, and the one upside of all this should have been that I could have expected no calls during my work day to deal with the rooster's issues, but alas, no. The inclusion specialist showed up unexpectedly to observe the boy, and so I had to go meet with her and talk about the potential for him to be fully included in general ed with an aide to help him -- or not. It was not an uplifting conversation. When she said, in a fully appropriate context, "He'll always be autistic," this should have been a no-duh for me, and especially since I'd set myself up for it, and I know it so well that I've said it myself. Instead, well....yeah. It's not the end of the world, but some days it feels like the end of my sanity. After this epic year, I still come back to the place of struggling with what the diagnosis MEANS, its size and shape, its impact on our tattered ragtag family.

Tomorrow the rooster returns to school. His nose is less green, but that's about it. I have NO (none, nada, zip, zero, zilch) hope any of us will have a good day. But I am helping with a high stakes project at work, and so my fingers are crossed that when the storm rolls in, I'll have some of that work under my belt. What a pathetic wreck I am, holy cow. A wreck.

If this were a job, I'd quit. Military, I'd go awol. Marriage, I'd file papers. This is my son, my baby, my boy, my first-born, my roo. I'm in. I'm in for the long haul. The haul feels long.

**Welcome, friends craving something, anything more positive and less wallowing from me.

The weather in SoCal this week nearly weakened my knees. The morning broke so gloriously here that I almost ate some of my LA-blasting words. On days like today, my father-in-law says he can feel the housing prices start to come back up.

A few months ago I became convinced my daughter could read my mind. I told J, who mocked me. That's okay. I don't need converts to what I know is true! Peaches and I were alone in the car yesterday, and she had on the cutest little outfit. I let her wear her new dressup peeptoe pumps, and as I drove, in my Keds, I kept thinking how much my grandma would adore seeing her, would revel in her girly ways, and what fun they would have trying on clothes and primping and such. I miss my grandma, I feel her loss so acutely when I look at Peaches. I wanted to think about something else, because I felt my eyes starting to sting, so I looked in the rearview mirror and asked, "Hey, Peaches, watcha thinkin'?" She said, "I'm thinking about princesses. And you are thinking about Grandma."

More of you have expressed a willingness to collaborate on my new project idea, and while I might not bring it up again here for a bit, I have plans underway to start laying some groundwork. Hurray! Yes, I'll take ALL the input I can get, from all of you, with huge thanks! Putting together stories for people desperate for community, support, encouragement, a good laugh, some hope... that sounds so beautiful to me. I always wanted to do Habitat for Humanity, but my awesome college roomie will tell you I blink every time a hammer hits a nail, and I'm a danger to myself and others around tools, power or otherwise. But I can help create a shelter for people who need it by using words, and I look forward to it.

I tasted a cake so good last week, after one bite I sighed like I was on my honeymoon and declared, "I'd like to change my address to this cake." This week, I decided no more cake, and I'm walking the straight and narrow... those ten pounds I never lost of baby weight? Well, Peaches is not a baby any more. She's three. Three... that's the same number of pounds I dropped this week. Seven more to go.

Well, just writing this helped me a little tonight. When I sat down, I was a foul-mouthed, bitter, shrewish monster full of seething and wahwah, and now I'm just tired and wretched ... a big step up. Thanks for reading this. You are a saint, you know.

And I still have a few minutes left to play FB games before I crater, and the night time waking tortures can begin...

Ready, Set, Go?

If you have ever read this blog before this very minute, you know I'm not the most "half full glass" writer in the world. Or on my block. Maybe in my house, until my husband starts a blog of his own.

But this week one thing feels positive to me. Amid sinus infections, hours up with a child throwing up, heart wrenching headlines, expensive errors, impending IEPs, a thousand variables in summer planning, work stress, concern for friends, and hurt feelings, one thing has me energized, motivated, dare I say optimistic? No, the yoga class my amazing friend talked me into (thanks, S) was simply divine, and I still can't believe I managed to go, but that's not it. No, getting back to healthier eating and seeing hints of the benefits feels good, but that's not it. No, I am fascinated by the B vitamin information I've learned, but that's not it. No, it's amazing that the rooster might get to attend camp for free for two weeks as as special needs son of a Jewish mom, but that's not it. (By now you are thinking that with all this manna I should really be ashamed of myself for griping.)

This collaborative book idea?

Oh, yeah. I love it. Everyone of you who commented last time? Or emailed me? Or FB shouted out? Let's do it. P, of course I'd love your help! There are seven of us, I believe, who feel like contributing something, whether it's writing or brainstorming or proofing. As a July baby, I think seven is a powerful number, and I'm ready to roll up my sleeves and plan. I can create a wiki so we have a shared work space for interested parties? We could meet in a video conference? Or someone could just tell me how to start? Because I'm ready to start. Someone just tell me how. This idea is the only thing that tastes like hearty hope in my greedy mouth, and I'm practically drooling for more.

Someone give me some homework? I'll do it, I swear.

Or tell me if we're on the same page? My "vision" or "mission" or "seed" or "concept" is this:
Create a book for parents facing a new diagnosis that tells the story of so many of our experiences: We were scared, we blogged, we connected, it helped us, and now we can share what we did/learned/tried as we encourage you to add your voice and find your own unique way.

The "chapters" or topics I keep contemplating:

• Diagnosis experiences
• Blogging/writing/self expression
• Family Life / Marriage / Divorce / Siblings / Extended Family
• IEPs / School
• Therapies / Medication
• Autism conflicts/ philosophies/the big why?
• Friendship
• Birthday Parties
• Emotions/Acceptance
• Having a sense of humor
• Community

Some of the big questions in my mind:

• Is it simply a putting together of posted blogs? Or is there a narrative throughline? I really think I envision a narrative organizer...
• What work serves as a good model?
• How do the comments fit into the story? Is there an interesting way to focus on them?
• How do we work collaboratively?
• all that legalish, businesslike stuff... so NOT my forte

I hope those of you who said you're in read this and don't feel like tiptoeing backward while I ramble... I hope I'm on the right track... just someone tell me where to start? I'm so ready, if you are.

What's the Story

I've been a fan of memoir as long as I could read. And lately it's had me thinking more than just a little...

When we reached the verge of the rooster's diagnosis, I scoured the book stores, Google, Amazon, trying to find a family that resembled ours. Naturally, no family does, and yet many families do. And that, right there, what I just said, I think has the makings of an important point -- one that makes me think I might write a memoir. And: SO SHOULD YOU. If you want to.

Yeah, so actually I guess those of us who blog already have. That's true. Here it is. We are telling our stories as they unfold. Those of you whose blogs I read? Now, talk about a "spectrum." Some of you tell your tales with such writerliness that I am awed, and some of you are so funny I snort, and most of you are so much NICER than I am. But here is the part I keep thinking about. How do our stories all relate? Maybe we need to put them all together. Maybe we need to write a communal book, and show lots of other families that our family looks exactly like theirs, and nothing at all like theirs, and that they too are part of our family, and that we want to share this thing with feathers? (And maybe we'd each make a buck? Get some respite and have a potluck?)

Or not. I'm tired. Things are hard. I'm aging. Maybe none of this makes any sense at all. Clearly my judgment lapsed grossly today, as I posted a current photo of my wrecked self on Facebook and didn't even make any self-deprecating comments, letting everyone have their own fun in the privacy of their own homes. (I can hear it now, "Honey, look. Do the bags under my eyes look as bad as HERS do? Wowww, concealer anyone?")

But, just for kicks, I've been wondering what the opening line of a book about the autism blogosphere community I inhabit would look like, how it would start, what would be the through lines, the organization, the first line.

Perhaps if I tried to write a book, it might start something like, "When we reached the verge of the rooster's diagnosis, I scoured the book stores, Google, Amazon, trying to find a family that resembled ours. Naturally, no family does, and yet many families do."

What do you think? Want to throw out a good line? Want to toss in a story? Suggest a narrative arc? Tell me to go to bed because I'm rambling?

Ups, Downs, and All Arounds

First, about the shirts.

If you want to participate in the Alex Barton t-shirt project, I'll dye you a shirt any size you want. Lemme know. First five I hear from get tye dye love from the rooster and me. But don't worry I need to feel the love -- I am sooooo sooooooo entirely, completely, utterly, undeniably, unfathomably, infinitely supportive to and sympathetic toward anyone who cheers on the project but opts out for full plate reasons. Oh, yeah. I am cheering on countless walkers for numerous good causes, I am there in spirit for my school's Big Sunday work service day, I send my regrets to the birthday celebrants, and I'm probably dropping out of the amazing online post graduate program I deferred last year in the hopes life would --- HA! HAH! -- get easier. I am a huge believer in It's the Thought That Counts. I am regularly blessed with oceans of good thoughts, and I'm grateful. And I know we send the waves of good thoughts cascading to the shores of the Barton home, and I know they feel it there.

Second, about song.

A hard, hard, hard week not just for me but for people close to me finally begins drawing to a close. About ten minutes before the end of my work day, I could barely tolerate the fatigue, and having taken only five minutes for lunch, I decided to wrap things up. Slowly dragging my way down the four flights, schlepping my giantabag and mamapurse, weighted down even more with the thoughts of an impending night of ABA at home, I had no expectation that I'd happen about a moment of light and beauty when I reached the ground floor, but that happened: I found myself witnessing a rehearsal of our school choir. When I approached, children 12 and under stood in a semicircle blocking my path, but why would I want to keep walking? They sang Hope is a Thing with Feathers, and my eyes filled with tears. They were not there to sing to me, but of course they were. I wish I could share it with all of you. Beauty and joy.

I have yet to decide if weeks or weekends win the Difficulty contest, but I'm hoping that tomorrow and Sunday bring you and your family some rest and joy, and some things with feathers.

Schooled

Usually when I write, as when I read, I like specifics. Details create the movie in my head that makes everything so tangible, so familiar. Forgive me if I'm scant on details today -- I'm trying not to out anyone, and I'm not feeling too writerly at the moment. Today is more about processing an epiphany than setting a scene.

I've been enjoying work lately because I've been inventing, thinking, crafting... mental Pilates, and at work my core feels tight, you know? I'm so much stronger at work than home. My job is about teaching learning, teaching teaching, learning teaching, learning learning... my job is about what it means to interact with people and information. The students I teach are not "mine," as I don't have classes per se, but I work with everyone on a project-by-project basis, alongside the classroom teachers. Lately I've been particularly enjoying a project with kids that involves all that good stuff, and I've watched their eyes shoot fireworks when things connected, and I've worked hard to cast a critical glance at my own self when I things didn't so that I could improve the project.

One student raised his hand and struggled to find the patience to wait for me to come over and listen to a question. The question began, "What if... what if... what if... what... what... um... what if ... what if..." The same student showed great articulation earlier, and, following the bout of impatience I had just seen, I assumed I was being joked with when I heard the stammer. I felt a little annoyed, and I sighed. Finally we got down to the question -- a really, really good question -- and I tossed back more questions to prompt a dialogue. We volleyed questions and ideas until we were both talking faster and faster, and we were both smiling. I told a classroom teacher, "Wow, I really enjoyed chatting with that child about the project." What the teacher said next reminded me of the student's name. A giant AHA moment flashed through my brain!!!!!

I had heard of this student before. I had heard a name referenced, in fact, way back, and it was associated with less familiar things back then. Wait! I wanted to back up, start all over. I wanted to replay the entire exchange we'd had, I wanted to NOT sigh about the long stammering moment, I wanted to remember exactly how much eye contact we'd had... I wanted to hug this student, who I know struggled once in noticeable ways, who I know "speaks a little French," who asks great questions, who charmed me today, who I get to work with again more this week, and who proved I am not, after all, entirely hopeless when I think about my own child and school.

You cannot compare people, we're all snowflakes, but a kindred soul is something you can't help but recognize.

There was more like that at school today -- more examples of kids who overcame things, found good doctors or medication or outlets or whatever -- and this is a very high achieving school. I often get so buried in my own quagmire I forget that EVERYWHERE people have challenges, and that you can find stories of overcoming obstacles.

Today, I was teaching and learning, and so were the children. Today I was able to finally hear those of you who have been telling me that the rooster has time still, that who he is at age five is not necessarily who he's going to be forever, that some of you have seen your kids improve by hundreds of miles from where they were in preschool. I am still thinking about what a learning day it was.

T-Shirts

T-Shirts, get your t-shirts.

Um, I know Kyra is a lot more popular than me, and for excellent reasons, but people, listen up: I. Have. T-Shirts. Size? 5T. And I'm willing to dye them. Just. For. Your. Kid. This very weekend. I've been desperately seeking 5 kiddos on the spectrum who'd like a beautiful shirt to let them know that we think they are special, and that we support all the Alex Bartons of the world, and all the Roosters out there... But so far, has anyone signed up? Nada. C'mon, join the Alex Barton tye-dye for justice party. First five takers, come and get 'em.

No clue what I'm talking about? Head to http://kyraanderson.wordpress.com/2009/03/17/the-tie-dye-t-shirt-project-update/.

The House on Margate Street

I recently listened to the incomparable Sandra Cisneros on the radio reading from her groundbreaking work The House on Mango Street, celebrating its birthday (was it 30 years? and how can that be?). I've been thinking a lot lately about the piece in which she says that what no one tells you is that when you turn eleven you are also still ten and nine and eight and ... well, you know, right?

I'm going to come right out and admit it. My take? What's been on my mind? Greedy stuff, and I don't try to equate myself with Sandra Cisneros when I say it, because that would really shameful. But here's the thing: What no one tells you is that when you are a mother, you are still a daughter, a granddaughter, a child, a needy baby. When you are a mother, you still get angry, hurt, or sullen sometimes, and you still want to cry, want someone to kiss the place that hurts to make it better, sometimes you still want to climb in bed and hug your pillow and wait until someone comes to rub your back to make it better. Now, none of those childhood comforts ever actually happened to me. I didn't have that kind of childhood. But yet since I'm still "eight, and seven, and six, and five, and four, and three, and two, and one," that means I'm still wanting, still yearning those childhood yearnings, even when I'm supposed to be on the other side.

Sometimes my son needs me to take care of him through a very rough patch, and although he's almost five, he's also four and three and two and one (plus there's the whole autism thing), and he does things he should not do, things he ought to know better than to do, and I know it, and yet... and yet... and yet... it's so hard to find my 37 year old grownup, when I too am four and three and two and one, and it feels like through his behaviors he's torn down my towers, broken my doll, pushed me in the mud. Sometimes I feel the childish urge to push him back, to take away his toys, to call him names, to sob, "That's not fair."

Today, I felt so hopelessly infantile as I tried to mother, that I picked up my phone and pushed the speed dial for my own mom. It was the only childish thing I could think of to do that would cause no harm. And when her line was busy, and when I began to cry with longing for my grandmother, with wanting to be the recipient instead of the provider, I thought, surely, when there is no other choice, I will pull it together? I will age up? I will mother. I was sitting on the floor, thinking this, trying to breathe, wanting to rise.

Then it hit me: I could call my husband's parents.
Yes, that small I am. I did.
I said, "This is what the rooster just did, and these are the things I thought about doing, and since I know all of those things are wrong, I thought I could call you, and just talk in the space in which I might have collapsed, and this will keep me accountable, and maybe minutes will pass, and then I will be able to keep it together and be the grownup again."

When I was ten, I needed my thick striped diary with the flimsy brassy key. I needed it to escape my home, and in it I wrote copious plans for my future. I outlined my grievances and charted my course for righting their wrongs one day. "I will NEVER this and that... when I'M a grownup, when MY kids are sad...."

And now I'm 37, with a blog reflecting my layers of immaturity, my juvenile self-centeredness, my black-and-white and wrong-and-right, and me me me. And thank goodness at least I have it, because what might I do if I didn't?

Today I'm 37, going on maybe seven or eight. Today I sat my sadness on my elbow, and watched as my street, an M street too, filled with other families hunting Easter eggs, laughing, smiling, no one fighting or worried, ten million miles away and foreign and yet just outside my window. I am sorry I am so small today, so small and so greedy.

A Weak Week

So you could probably tell we've been having quite a time over here. I mean, even worse than usual.

Each time we have a regression of any sort, my resilience feels less and less. But each time I learn something, too.

For one thing, without sounding like I've attended too many technology workshops or read too many books by "futurists" (which actually I think I probably have), there really is something to this concept of "crowdsourcing" and the wisdom of the collective intelligence. This blog is all the evidence I need. Those of you who comment and email and call: you all are a WISE crowd, and collectively you are my map and compass.

And also: my boy, the rooster, is a finely wired little guy, easily short-circuited. Turns out that this week he had some food infractions we didn't know about. Yeah, AHA is right. I will say it again: I didn't believe in the GFCF idea before we tried it, I don't know why it helps the rooster, I don't believe it helps everyone, I don't blame anyone who doesn't want to do it, but it blows my mind; I am converted. For some reason, you give my kid something with gluten in it, and, shazam, coherent dialogue disappears. Ta da, nonsense words and heightened ggression show up out of nowhere. This week he was saying, "shundundeenduh" over and over, in a mocking tone of voice, and screaming, "You're the MEANAGER, the MEANAGER" as he antagonized his littel sister. It's been a long time since we've seen this, since my son could only point to tell you what he wanted, since he answered every simple question ("What did you do today?") with the same one word non sequitirs ("Chanukah!") In the last couple of days, he's jumped off the back of the sofa several hundred times, jumped onto the coffee table several thousand times, and torn apart his room several dozen times. Just as I was about to check myself into a hospital, we figured it out: those are not gfcf tortillas. Goodbye new tortillas. Hello, rooster. Now we're talking, if you know what I mean.

This makes me happy and sad. Hallelujah, we're going back to our tolerable level of misery, instead of the apocolyptic level. But, man, how much does it suck that my son crumbles with something as small as freaking TORTILLAS?! How on earth will we manage to keep them from him forever? Forget forever, how about when he goes to public school in the fall, and isn't at school with me to watch out for him? Surely someone is going to give him a tortilla here or a french fry there, and HE'S not going to say, "No thanks, that is not on my diet!" And then also this, this so important question plaguing me: What else? what are the magic triggers we don't EVEN know about? I mean, I cannot for the life of me guess how the very first person discovered the gfcf diet, but it probably took a lot longer than the whole apple falling from the tree hypothesis, and maybe 20 years from now we're going to find out he was suffering from... I don't know... laundry detergent intolerance, or that all he needed was to sleep facing South or something... and I wish I knew all the answers now, all the solutions to help my boy, all the magic and good mojo and voodoo and all of that, because what if he feels as trapped by all this misbehavior as we do?
Wow, I realize all that sounds like I think he's lost and needs a cure and all that, and as I've said before, that is not my take on autism. Really I'm not talking about fixing the rooster. I'm talking about removing the things that hurt him, because I am here without any scientific credntials to tell you that gluten and casein turn him into a tempestuous, tantrum throwing wreck, and I think he hates it almost as much as we do.

We're coming up on a three day weekend. Wish me luck, and lots of it.

Anger Managment

As a kid, I felt angry at my parents almost all the time.
Mostly, I felt angry about their anger. So, I guess you could say I blamed them.
Now that I have kids, I am angry at them most of the time. I say, in this blaming way, "You make me so angry!" Usually I'm angry about their fights.
So, I think about that and draw a few possible conclusions.
Maybe it's really not anyone else: maybe it's ME. Maybe I am an angry person, and my parents and my kids are not the problem.
Or, perhaps things skip a generation. Maybe I had infuriating people above and below me on the family tree.
Or, maybe we're all alike, my folks, myself, my kids. We're fighters.
Or maybe I'm a wimp, and I need to suck it up, get over myself.
I can accept any of those truths, because I haven't got a clue. I don't know where the anger begins and ends. I know that I feel like I'm losing my mind. I know I want it to stop.
When anger makes me angry, it's the epitome of a vicious cycle.
I know that autism at our house means rage. If you took the anger out of our autism equation -- if my son never screamed and howled and attacked and raged -- we wouldn't have much diagnosis left. We'd spend a lot less time in therapies. We'd have an elementary schools and summer camps willing to take us. The rooster came out of my womb pissed off, and at that moment things came full circle for me -- born into an angry family, raising an angry family.
I am not my parents. My father, an alcoholic, cheated and scammed poor people, cheated and scammed my mother, defrauded the government, and ran for the border. He was a mean drunk. I don't drink, I hate cheating, I over conform to rules, I give to the poor, I do not drink.
My mother was a co-dependent, self-loathing, bitter woman scorned the first 18 years I knew her. I married a kind mind whose only addictions are James Bond films and me.
My parents believed in spanking to teach a lesson, and I believe that hitting your child teachers your child to hit.
So why is it my home today reminds me of the home I fled growing up? It's loud, it's full of conflict, and it makes me angry.
When I was a kid, everyone I knew seemed to have a nicer family than I had. Now that I have kids, everyone I know seems to have happier, sweeter children than I do. That's not a pity party talking. That's my fury. Right now, I'm seething.
Seethe.
Seething makes me sick.

On Our Corner of the Spectrum

This month, as we give extra attention to autism, I thought I'd write for those people who read this and wonder, "What is it like having a child with autism?"

FOR US, and I only speak for the rooster clan over here, where we have a son with high functioning autism and possibly ADHD, this is what it's like:

- We've never left newborn mode in some ways. Oh, our boy has grown, and he can feed himself, do some of the dressing and undressing tasks, and talk a mile a minute when he chooses. But, just as when we brought him home from the hospital, he has a sometimes strange sleep schedule, wears diapers, and cannot be out of our sight for more than a minute or two. This last fact makes us quite weary, and even if you think you can imagine it, it would be pretty hard to do unless you have a child on the spectrum too, or unless you spent 24 hours or more in a row here. We invite you to do just that; we'll be at a Holiday Inn! :-)

- Priorities shift. Educational priorities, financial priorities, scheduling priorities, personal priorities, social life, career plans, future plans... time... everything has a new slant, for us. Autism is NOT the focus of our lives, but, like our son, we never let it completely out of our sight. It's an added prism on the lense, for sure.

- Sometimes I feel like we found ourselves dealing with autism at a particularly odd time, a coming-of-age kind of awareness time of a sort. The media seems to be waking up to autism and the spectrum it encompasses, not just this month. I keep having startling brushes with the word lately. I go to throw a magazine on the recycling pile, and it falls and flips open to a story I had missed about autism. I turn on the DVR of Sesame Street and one beat before the too familiar music begins, I get the tail end of the autism commercial. It's there when I sneak a second of NPR before the kids insist on their cds; it's referenced in the parenting listserv to which I subscribe; it's the charity receiving funds from the store I shopped in today. GREAT that finally this issue, which I knew so little about before our diagnosis a year ago, finally gets important attention, which boosts support for families, education, funding, research, and more. But the attention comes with its costs, too. For one thing, I have to admit there are days I wish I could escape the word, which seems to want to take over my life at times. It's not denial I'm talking about, it's breathing room. It's balance. For another thing, all those things in the media everywhere? None of them sound like my kid. Sure, people reference the spectrum, but they tend to describe finite shades of that spectrum. Sometimes the stories are sensational, sometimes stereotypical, sometimes just narrow... I've read libraries full of stuff about autism in the last year, but only once in a while do the behaviors described feel like what I see at my house with my child. Finally, there's backlash. Certain lame comedians not worth naming use the hot topic to garner attention for themselves while exploiting vulnerable families, for instance by claiming our children don't have autism, they're just stupid. Lame, and decidedly not funny, but painful too.

- Awareness. I can't believe how little awareness I had about ALL THINGS special needs before my son's diagnosis. I am a teacher, 14 years and counting. I have a Master's Degree, I am well read, I pay attention. I knew little about autism, and less about sensory processing disorders, aphasia, apraxia, DS, CP... I knew nothing about IEPs, IHHS, Regional Centers... I have learned so much. And in learning, I have grown. The awareness is one of the things I'm grateful for, along with the relationships I've forged with people whose lives and careers are about helping those with special needs. If I could do things all over again, I might have chosen OT as a career path -- though, come on, we all know I'm not coordinated or patient enough.

- Defensiveness: For me, I feel the invisible shoulder pads and helmet I put on each day before venturing forth with my son. I know I'm too sensitive, and I'm likely to encounter many prickly situations throughout the day, situations where I feel compelled to repeatedly apologize, or thank profusely, or explain, or cringe. I told my husband I need a shirt that says THANK YOU on one side and I'M SO SORRY on the other so I don't lose my voice repeating myself all the time, and for those people who don't find that enough I can always use some universal sign language, if you know what I mean! But, again, I know my projections are often the problem in this scenario, and I have become less sensitive over time, as I adjust to our situaton and grow more comfortable with our family's place out in the land beyond our home...

- Finally, the writing... I've written things for as long as I've known how, starting a diary as soon as I could spell the word diary, and it's been for me everything from a release to a joy to a profession, but now writing saves my sanity. It is the ONE and ONLY thing that makes me feel better when I get the autism blues. Oh, if you are thinking that sounds sad, and wonder don't my friends and family make me feel better, then maybe I need to explain the autism blues. For me, the blues come when I feel like autism gobbles up our lives and leaves me scared, lonely, afraid, desperate, lost, isolated. Then, I write. That helps me find my way back to my friends and family, helps me reconnect with my priorities... and, the best bonus in the world, it allows me to connect with the blogosphere, where people I know and people I've come to know offer me support, love, and ear, wisdom, reminders, information, love. This blog is the best medicine for what ails me. It is the ONLY thing that helps me sometimes... the writing, the connecting, the reading, the writing -- it always comes back to the writing. The writing gets me through the tough spots. The writing is something either autism gives me, or something I give myself, or a gift I rediscover because of autism... but whatever, it is the good thing, the salvation, the life boat. It's the way I breathe again, the way I release the toxins, uncurl my fists to make some room for hope.

And that, my friends, is what it is like for ME, and only me, as I raise a little rooster who, among many other things, has autism.

Autism Awareness Day

Happy Autism Awareness Day.

The happy part of my day came when I got home and opened the mail to find a "stunning" (this is my kids' favorite word of the week, thus the quotation marks) tie dye shirt sent to us by Kyra and Fluffy at This Mom. I got so excited I yanked off the shirt Rooster had on and oohed and aahhed over his blue and purple shirt of love and hope and inclusion. I can't wait for tomorrow for him to wear it to school, and I sure hope people ask me about it... they will, because Fluffy did a fabulous job with his mom. Thanks, friends! Don't know about the tie dye shirt project inspired by Alex Barton? Well, here is the low down from This Mom. Now, WHO NEEDS A SHIRT? I need to get five in the mail asap... so comment or email me already. First come, first served... and I will need your snail mail address and size please.

Another nice thing about AAD? While I didn't spread around as much awareness as I might, while working hard to just scrape by, people close to me reached out to share or boost their own awareness. A friend and colleague stopped by my office just to hear how things are going, and I flooded the room, and she gave me a big hug. Another friend and colleague sent me a great article about autism, filled with hope and possibility. She also sent me a link this week for great looking gfcf baked goods... (several of my friends have been watching our backs with these yummy leads.) The Rooster's wonderful first OT dropped me a note just to check in on "our boy" today, even though she hasn't worked with him in two years, and in fact isn't doing the same work at all anymore. It felt good to be reached.

The rooster finally made it through a day of school this week, but by the skin of his teeth, and the grace and kindness of others. For that, I am grateful.

I managed to take both kids BY MYSELF to a healthier version of a fast food restaurant for some gfcf dinner on the way home tonight, and we survived. We didn't go unnoticed, but we survived, and filled our stomachs.

A new bulletin board went up at my school today representing multiculturalism. A mom made it with lots of pictures of our kids expressing "hello" in many different ways. Two glorious pictures show my boy and a sweet girl friend of his bowing to one another, all smiles. As I walked past it, two people commented on the beauty of the image.

I found out today that I have more sick days left than I thought I did, and a few vacation days left too.

In honor of Autism Awareness Day, since I'm toooooooo tireeeedddd for advocacy, I thought I'd tell you all the good stuff I could. I want to finish with a Notable and Quotable.

Nurse to Rooster: You did a great job today! What a good patient!
Rooster: I'm adorable!

Stuart Little (on cd): See that boat? I just HATE that boat over there.
Peaches: That man sounds just like you, mommy.
Me: Why do you say that?
Peaches: Listen, he's saying mean words. Just like you say mean words.

Rooster: Mommy, can I have my Easter matzoh now?

Loud Week

So far this week
Rooster has been sent home from school
We have taken turns not sleeping
We didn't get into dreamy charter kindergarten
We paid our taxes --- OUCH!
We've talked to doctors every single day
We discovered one medication that does NOT fit; chalk it off the list and let's move to the other 4 trillion that have been suggested, unless maybe that sounds like turning our beautiful boy into a chemistry set, which doesn't appeal to me
I've fantasized about living off the grid... I heard about a cool cave for sale...
I indulged in some retail therapy, which combined poorly with the aforementioned tax paying
and some good stuff happened, but it's hard to hear it over this other noise