The "A" Word

Cussing. Cursing. Swearing. Whatever you call it, my kids are totally obsessed with it. Only I won't let them use the actual words. The first time Peabo dropped an F-bomb on me, he got a 30-minute time-out and a stern talking to. What I hear now is three kids hollering about "the bad 'F' word," "the bad 'B' word," and even "the bad 'O' word."

The bad "O" word. That's a new one.

And that's why I'm talking to my kids about Asperger's Syndrome. I don't want it to be another word we never say.

I read a few autism mom blogs by better informed moms with better therapies and better strategies for working with their kids. And I know many of them have been open and honest with their kids from the get-go, giving Asperger's a name.

I don't think I've been dishonest with my kids, though. I mean, Peabo's in seventh grade, and he's a bright, bright kid. He knows he's different. He's been through endless testing and retesting, through OT and PT, through tantrums and suspensions. When he was mainstreamed, he had a full-time aide and different testing and time in the Resource Room. But it took us forever to get the label. Peabo was identified at the age of three by his very astute preschool director, but despite ongoing, persistent effort, we didn't get a formal diagnosis until he was in 5th grade. So our conversations were not about labels but about differences. About how some people need more help than others. About how everyone has things they do brilliantly, and things they do poorly. About how what works for him doesn't always work for his siblings.

We just never used the word.

For years, I've watched my two younger kids struggle with their big brother's more challenging behaviors. There's the talking and the talking, and the repeating and repeating. There's the tantrums and the threats and the hating to lose. And his siblings have responded ... mostly with fingernail scratches and the occasional kick to the shin.

Not okay.

Veggie Girl's been talking to someone from time to time about her feelings. When this someone heard about the fingernails, she suggested a book: Autism Through a Sister's Eyes: A Young Girl's View of Her Brother's Autism.

So we started talking about autism. And Asperger's Syndrome. We used the words.

There's already one bad "A" word. We don't need to have two. Or three.

I told Peabo about his Asperger's over dinner one night (because the dinner table is where all the best conversations happen). He said, "Asperger's? Huh. May I have more bread, please?"

Since then he's learned from many of his friends that they have Asperger's too. He - and his siblings - have learned more about what that means. We've started the conversation.

I kinda hope it means the kids will stop beating up on their brother. Though, being that they're siblings and all, that's seriously unlikely.

Oh and hey, if you happen to know what the bad "O" word is, do tell. They've totally stumped me with that one.

Oh, the Noise, Noise, Noise, Noise!

I follow several blogs by moms who have kids who on the autism spectrum. It's a great community, a supportive one, and I learn a lot from these women. I'm glad they're out there.

Many kids on the spectrum also suffer from Sensory Processing Disorder. One of the blogs I follow, Hartley's Life With 3 Boys, is raising awareness and funds for SPD by spotlighting 30 families in 30 days on her blog. Her efforts will benefit the SPD Foundation, a leader in SPD awareness, education and research. It's interesting reading, often deeply touching, and often hitting very close to home.

My Aspie - and this is probably where I should come up with names for my kids, because his label doesn't define him - well, he does have some sensory issues. Mostly, he is hyposensitive to touch. I remember once, when I was chaperoning a field trip, a rather aggressive kid got off on this hand-slapping game. The goal was to slap another kid's hand until he couldn't take it anymore and finally gave up. My kid? He never gave up. By the time I saw what was going on, my son's hand was screaming red. Anyone else would have been hurting.

Not him.

His need for stimulation affected him a lot when he was little. He chewed anything and everything. He ate his pencils down from the erasers to the nubs. I've been pulling out the clothes he wore at this age to hand down to his little brother - only I can't hand them down. The collars and sleeves are chewed to rags.

His first IEP included therapy for sensory issues. But because SPD wasn't among his official diagnoses when we moved to this state five years ago, that part of his IEP was tossed, and I was never able to get it reinstated.

I'm okay with that, though. He'd started refusing the therapies. The weighted vest embarrassed him, as did the chew tubes and the wiggle seat. And, over time, he's learned to manage many of his sensory issues.

Not so much his mother. Only, for me, it's noise.

Every. Little. Noise.

Big noises, they make me jump. But it's the little noises that truly make me insane. The clicking of a pen. The ticking of a clock. The keening of a fork scraping along a plate. I had to get rid of the TV in my bedroom because the constant hum of the DVR kept me up all night. And I buy popcorn at the movies - every single time - to drown out the inevitable sounds of snacking around me.

And those family dinners I love? Torturous. And that's with my own kids, who have spent the past year listening to me say, "Chew with your mouth closed," and "Don't bite your spoon," and "Stop slurping! That cup is empty, dammit!"

Only I don't actually say the "dammit."

Just imagine how bad it is when we've got other kids over, kids whose moms don't have weird noise issues. Because my kids' manners, after a year of hardcore family dinners? Gorgeous. Just gorgeous.

And still not enough for me.

While my son is learning to manage his issues as he ages, I'm just getting worse. I don't know if it's the insomnia or if mid-life wrecks your ears as much as your eyesight. But by the end of the week, when I've got the heavy duty Friday tireds, my kids are lucky if I feed them at all. I just can't stomach all the chewing. (Stomach. Chewing. Get it? Ha ha.)

And that's the real origin of our Friday night movie nights. Friday nights, I lay a blanket on the floor, let the kids pick a movie, and set up a picnic in front of the TV. The background noise and the fact that I'm sitting on the sofa on the other side of the room make all that chewing manageable. And it's the one night each week that my kids don't have to listen to me complain.

I love Fridays.

First Days

My kids started school this week. One kid at a time. Which means we had three - yes, that's THREE - first days of school. Three days where mom woke up at the crack of dawn and lovingly prepared a breakfast of chocolate chip pancakes with bananas and sausage. Three days of snapping pictures and stuffing backpacks to the gills with school supplies. Three days of nerves and joy and the general angst that comes from changing your whole schedule around from one day to the next.

And the next.

And the next.

Monday was my diva's first day of third grade. It was also the day my new Kindergartner went in to meet his new teacher and see his new classroom. The ex came too, which tickled the kids pinker than my daughter's hot pink polka-dotted leggings. The whole group of us walked to school together.

She had a great day.

I, apparently, did not. I walked right past all the "here's what to do for the first day" papers in the Kindergarten classroom. All of them. Which was a problem.

But not till Wednesday.

Tuesday was all about my Aspie. He's in 7th grade. And that scares me. Because I remember 7th grade. I remember getting thrown up on by the girl on the riser behind me in the spring chorus concert. I remember roller skating and school dances and "going with" a cute, slightly geeky, very tall boy named Jeremy for about a week. I think I dumped him, but it's hard to say because I also can't remember having an actual conversation with the guy. It was all about the intermediaries in 7th grade.

(Note: cute, geeky and tall remains my type to this day. )

So, heck yeah, 7th grade scares me. Puberty and tweendom and all that. But what I'm not scared about this year, for the first time since my Aspie hit Kindergarten, is school. School is good. School is great. My Aspie is in a place where he is cared for and supported and loved. Where he's learning and active and making friends. The transition from summer is still rough, and he's been a bit of a tired, tantrummy mess most days this week. But he'll adjust. And that's the minor miracle. He will adjust.

And then came Wednesday. The day I sent my baby off to Kindergarten with his new red backpack and his name tag, and no stuffed animal for show and tell. Because I totally missed the paper.

Oops.

He was fine with it, though, when I told him. He's that kind of kid.

I stood back and watched him, standing in line in front of his new teacher, waiting for the kids from the last bus to arrive. He was pensive and nervous and looked so very young. And then, just before the teacher led her line of students off into the bowels of the school, he turned to me, shot me an impish grin ... and stuck his tongue out at me.

I burst into tears.

How did my kids get so grown up?

Damn. I think I blinked again.

Sex and the Single Aspie

I have this cousin who is One Smart Cookie, and who is also, for various reasons, interested in the subject of Asperger's Syndrome. We haven't talked about it much, but given that we're friends on Facebook, he sees my posts, and I see his.

He posted something today that, well, it was interesting. I'm not ready to share it with my own general public on Facebook. But I am very comfortable sharing it here, where I can give it some context.

The article, "Asperger's Syndrome Sex: Love's Outer Limits," was posted on CarnalNation.com. It's part one of a multi-part series.

And it's fascinating.

I can't speak for the other moms of tween Aspies. Mine is in middle school. He's learning about hygiene and puberty and how his body will change. And he's thinking about girls. He's asking about first kisses and why unmarried teens have babies and whether I have a boyfriend. (And no, those last two are not related topics.)

Sex and relationships are part and parcel of growing up, no less for him than for other kids his age. A lot of his coming of age will and should be private - i.e., not bloggable. But as his mom, I do have some thinking to do about how to talk to him about this stuff. And that thinking should be okay to share.

I don't know about other parents, but I want my kids - all three of them - to have healthy and fulfilling relationships. I don't care whether my kids are gay or straight or ambiguous, but I do care that they find a way to connect, a way to be loved, a way to get hugs and kisses and the fulfillment that comes from a loving physical relationship. I want them to be respected and respectful. To know themselves, their hearts and their bodies. To know what they need and be comfortable saying so. To know when to say no, and when to say yes. To make good and responsible choices.

And I've wondered how all of that might be different for my Aspie. Because it will be. Any interpersonal relationship works differently for him.

And it hurts me when I think that my Aspie, who already struggles so much to make friends, may struggle so much more to find love.

This article gives me a beginning, a place to start from when talking to him about this stuff. And I'm thinking I may forward it to the guidance counselor at his school, where there are eight other tweenage boys starting the same journey.

For the record? I had my first kiss at seven (apparently, so did my daughter ... the things you learn over breakfast!). And I successfully dodged the boyfriend question. The subject of teen pregnancy came up after the season finale of Glee. I told him that unmarried teens like Puck and Quinn have babies when they make poor choices. My older two then asked me what those poor choices were, and I said something like "it's called 'having sex'," and both of them promptly changed the subject. For which, I am thanking my lucky stars. And thinking madly about how to answer it when the subject comes up again.

I'm a Glogger!

Or is it gublogger?

However you shorten it, I'm pleased as punch that my friend Shannon over at Meltdown Free Disney invited me to guest blog on her dime. My post is called Rosemary, And Time, and it's about the tricks and strategies I use to manage vacations that satisfy all four of us and our different needs - well, five when you include the awesome au pair.  

If you're one of my regulars, trek on over there and see how Shannon is helping all families experience the Disney magic, stay on budget, and create positive memories. She knows her stuff, and I gotta tell you, it's wonderful, thoughtful, creative stuff. I learn something new from her in every post. In fact, she inspired one of my own posts - Groundhog's Day - with a conversation about why winter really sucks when you're on the spectrum.

And if you're visiting from MFD, welcome! Take a look around, have fun. There's always room for one more.

Groundhog's Day

It's winter. I know this because today was a snow day. Which meant no school. Again. For the umpteenth time this year. And we're expecting a blizzard on Friday, with more snow the following week. At the rate we're going, my kids will be in school until July.

Do you have any idea what all this winter does to a kid with Asperger's Syndrome?

Winter means snow days and two-hour delays and early dismissals. It means holidays and half days and exams. Every day is different. Every day breaks your routine. And that routine is important. That routine helps you stay calm because you know what's coming next.

That routine is toast.

Winter also means gloves and zippers and making sure your shoes are tied and your feet are not slipping on the ice. Not so easy when fine motor skills and balance are your physical Waterloos.

In our school system, winter also means geometry, which for sixth graders is graphing and plotting and spatial relations.

Now picture yourself as a kid with an inspired math brain. You just get it. You know innately how it all works because numbers make a beautiful, simple, logical sense. And yet, because your brain and your hands aren't in synch, you can't make all that graphing and plotting happen on paper. Picture yourself and your low frustration threshold dealing with that. Then picture the social dynamic of trying to find a partner to work with, and not understanding why he won't, or why everyone's mad at you for the way you tried to change his mind. And  this is after you put on your gloves and zipped up your coat and tied your shoes and balanced on the ice and missed a few snow days and didn't eat your lunch because the lunchroom is noisy and distracting and the kids don't make sense and you haven't seen the sun in days.

I'd have gotten suspended, too.

My Aspie and I, we hate winter.

The groundhog saw his shadow yesterday. Six more weeks of this mayhem and madness are on their way. So, yeah, I pretty much hate the groundhog now, too.

Lots and Lots of Soccer

Today I spent eight and a half hours - yes, you read that right - playing, watching and thinking about soccer.

My little guy kicked us off (ha ha) at 8:30. He's a goofball on the field, but he takes the game very seriously. Which is only just a little odd in a four-year-old.

Then it was my diva's turn. Last year, she was a cheerleader and very, very girly. But in her recent I-want-to-be-a-tomboy phase, it suited her to try soccer instead. She's jumped in with both feet (ha ha ... yes, folks, it's Bad Pun Day here in the Elbow-verse).

We had a short break, some hot dogs for lunch, a quick turn on the Wii, then dashed off to my Aspie's game. He finished at 5:00. Nearly dinner time, and yet not one of my kids was hungry.

This is because, in the New Millennium, soccer is less about the sport than it is about the snacks.

I remember orange slices and big coolers of water when I was a kid. Not that I was an athlete. I figured this out when I'd go to the park looking for a quiet place to read. Instead, I'd find orange rinds in the grass. Not so fun to sit and read in the middle of a pile of orange rinds.

These days, no one is that healthy. Cookies, crackers and "juice drinks" in individually wrapped packages, that's what we give our kids. Lots of sugar and refined starches. Ick. Tasty ick, but ick nevertheless.

My Aspie loves the snacks. He begs the snack mom for handouts at his siblings' games. Bright orange crackers, powdered cheese, juice boxes - well, juice pouches - and all.

Which is how I discovered that he can't open his own juice. He snagged a juice pouch at his brother's game, then brought it to me and said, "Mom, I can't open this. I have a disability."

Um ... what?

I haven't talked to him much about "disabilities" and "special needs." He can see that he's different from other kids, and generally he knows how he's different. But it's the first time he's ever used the word "disability." At all. Ever.

So, with him perched on my lap to watch his sister's game, I started the conversation. Do you know what a disability is? No, but some kid in middle school (oh, yes, we love middle school) told him he had a disability because he has an aide. We talked about how a disability isn't a bad thing, it's just a different thing. I pointed out the ways he needs extra help in school - his medication to help him focus, his new Neo to help him write, his aide to help him calm down and stay organized. And we talked about the things he's great at - that he can spell practically any word he hears and do math in his head and read a 93-page book in about 6 seconds flat. And I told him that everyone has things they need help with and things they don't.

I also finally gave him some names. We talked about ADHD and what it stands for and what it means. I didn't yet give him the Asperger's. That will come, though, now that we've opened the door.

And then I taught him how to open his own damn juice.

Because he's right. His fine motor delays have made it hard for him to learn things like how to tie his shoes or stick a pointy straw into a little plastic pouch full of sugar. But I'll be damned if I let him use it as an excuse.

So, juice. And soccer. Lots and lots of soccer. One gorgeous, sunny day. Three exhausted kids. And thirty minutes of a really wonderful conversation that helped my son learn more about who he is.

Not that his disabilities define him. What I think he's learning is that, in fact, they don't.

P.S. - For those keeping track, the Sleep Plan is so far an utter failure. I'm sleeping less than ever. It has, however, sparked the greatest response in the brief history of my little blog, and soon I'll share the interesting ideas folks have sent me. In the meantime ... well, we're going to try and kick this sleep thing off again on Monday. Wish me luck!

Barbecue

Today, I watched a woman verbally eviscerate an entire room full of people on behalf of my son.

I love her. I want to bake her cookies. Make her a meatloaf. Decorate her a stunning 3-tier celebration cake in a whole rainbow of colors.

This woman is the advocate I hired to help my beloved Aspie get into a school where he can get what he needs to be successful, to thrive, and honestly to learn that he is worth loving, something that his dad and I haven't been able to teach him by ourselves, despite nearly 11 years of trying.

He's a great kid. Super smart, full of heart, naive and trusting. And the public schools in our area - and I'm a huge advocate of public schools, I really am - they are killing him.

So I hired this woman to do what I cannot. To raise her voice and stand up for him. To yell at people and call them names. To make them see what should be right in front of their noses. That he needs to be around kids like him, if for no other reason than so he can make real friends. That he needs help to manage the emotional minefield of peer relationships, and even teacher/student interaction. That he needs small groups of students and patient teachers to thrive, to learn, to find his own version of success. And that he is smart enough - this kid, he's so smart! - that surviving should not, by itself, be enough.

We got his classification changed. After 5 years of pushing and testing and more pushing, the schools now finally admit that yes, he has Asperger's syndrome. (You don't want to know what they'd labeled him before - it just pisses me off.)

Other than that, though, we failed. The entire elementary school team was on his side, and we failed. Dozens of tests, the endorsement of a truckload of psychiatrists, along with that of the biggest name institution in this field. And we failed.

We failed because of one inane bit of bureaucracy. Our elementary school never asked for help. Under enormous stress because of the regular school environment, he acted out. More than once. Tried to run away from school. And because they love him, they managed it themselves. They never asked for help, unless it was from me.

So now, he's not getting any.

We have one more - very unlikely - shot. And I'm going to bring my new best friend along to articulate what I cannot.

I hope she skewers another dozen people and roasts them over an open flame.

When McDonald's Really Is The Answer

You know it's going to be a rough week when on Tuesday your 10-year-old runs away from school, then tells you he doesn't want to live anymore because life is just too hard.

When that happens, for a mom, there is part of you that just wants to crawl under the covers and sleep for days on end. You want to shut down and shut it all out. But you can't. There's a little person you brought into the world who needs you to be whole so that you can keep him in it. You find a way to find the joy and bring it back to him.

We got him help, and are continuing to get him help. It's had an effect on the whole family, though. The other kids are antsy, whiny, angry and clingy by turns, and he is still a yo-yoing bundle of challenging emotions. I've been working very hard to focus on family - more time spent together at dinner, more time for playing, more time for talking. Curling up in a top bunk having a good heart-to-heart and a hug. You find the joy and focus on it, make everyone else see it too. He's okay, for now. But the scary thought is back there, for both of us I think, and the next time he cycles down - because he will - that thought will jump out like the smog creature in Lost and start wreaking a little havoc.

Friday is our movie night, something I instituted since my husband and I separated as a way to make the kids feel special and give me a break at the end of the week. We spread a blanket on the living room floor, enjoy an indoor picnic, and watch one of the 137 kids movies we have in our collection. Tonight, my oldest was with his dad, meeting a few professional athletes, having KFC (his favorite fast food), and spending the night enjoying some one-on-one male bonding. But the little ones needed a treat, too. So tonight it was Aladdin and McDonald's. Because sometimes a Happy Meal with a cheap plastic toy and a mountain of french fries really is the right answer. Or, in mom's case, a Big Mac and a strawberry shake. Same thing. I'd planned a lovely shrimp dinner with green rice and fresh steamed artichokes. But I gotta say, those two all-beef patties really hit the spot.

I did get to indulge my own passions earlier in the day. On the way home from a meeting, I stopped on impulse at the brand new Safeway the next town over. I'd enjoyed watching them build it - they razed the old building and started from scratch. It opened several months ago, but I've never gone in. I visit two stores in my own town and remain fairly loyal to them. And I do visit both, regularly, because neither has everything I need. I can get cinnamon coffee creamer only at the one; blueberry applesauce only at the other. And a Sara Lee Butter Streusel Coffee Cake only once a year when some distributor accidentally drops it on the shelves.

But this new store - it's stunning! Clean and bright, with a layout that's fun and leads you deeper and deeper in. It's designed for those who browse! And it's a mecca for a wannabe chef. Every variety of everything I could possible want. My area doesn't have a Wegman's or Whole Foods - we are light on gourmet or organic grocery stores. But this one, it's definitely got its own charm. Shelves full of every ingredient I've ever searched for in vain. Fire-roasted everything. Basmati rice and flax meal and three different kinds of barley. Every flavor of applesauce imaginable. And the produce! Jerusalem artichokes, tamarindo, long skinny Asian green beans. And one or two things I didn't recognize. You're inspired to try new things, to get creative and play with your food.

No Sara Lee coffee cake, though. I'm starting to think that it's a regional thing. Maybe Marylanders just don't eat it? Another good reason to move.

The week is over. I know my boy is safe with his dad, but I wish he were here 'cause I miss him.