10 Milestones Not In The Parenting Books

When you’re anticipating the birth of your children, you dream of the first tooth and the first step. There are pages in baby books where you can document these milestones with dates and photos.

Theo is 12 today. Here are the milestones I never thought about, but for us, have been remarkable events. The first time he:

1. Said dad instead of daddy. Then later, mom instead of mommy
2. Crossed the street himself
3. Rode his bike to the park on his own
4. Sent me a text
5. Sprouted hair above his lip
6. Used his own keys to walk through the door
7. Looked in a mirror and cared about what he saw
8. Met my gaze at eye level…for he was exactly my height
9. Found a lower octave sneaking into his speech
10. Was embarrassed by his mom in public

Tweenaged is so interesting. He’s still a kid in many ways. Yes, he was bored on our recent farm trip, but he still says “Oh, yay!” when we’re doing something he’s excited about.

Jekyll and Hyde: The Tween Years

Sometimes he’s the kid we recognize, the sweetie pie he’s always been reputed to be. Others, he’s moody in a way that's new. Once in a while he’ll slam a door, which is more amusing than maddening since it’s so unlike him. He’s always smiled at our annoying jokes, but lately he’s exasperated when we joke with him too much or ask too many questions. Recently he even grunted when I touched his hair!

He sucks at talking on the phone but is great about texting – very responsible, probably because he’s still excited to have a phone, even if it is a hand-me-down with no working sound. 

Suddenly he wears the same jeans every day because he likes them. 

His vocabulary has been reduced to "good" as the answer to most questions.

And have I mentioned how he’s grown like whoa? Yesterday, he and I shared shoes. Today, he and Joe switch their 10-and-a-halves. Two months ago I blogged that he would be my height soon, and now he is.

Pride is something I see Theo experiencing more often these days. He's proud to have more independence -- a phone, his own set of keys. He actually cared about the praise from his teachers at the end of the year. He was proud to get a compliment about being the best at sound in film camp, and proud to be a junior counselor at another camp (he came home smiling every day that week). He learned to sign his name in cursive, since they didn't teach it in school. He has an email address. Little things like that are increasingly giving him confidence. And so far he hasn't tired of everyone commenting on how tall he is!

He is still ultra cautious when crossing the street – overly so, but I'm not in a hurry for that to change. Recently, he walked off the subway to go to school…while I stayed on it. I didn't expect it to be such a strange feeling... he had been alone in our neighborhood plenty, but here he was, released to LIC? The panic was starting to set in when 4-5 minutes later I got the text that he'd reached school. Silly mommy.

Some things are constant  – his devotion to his little sister. His ability to play Minecraft and Wii U all day is equal to his ability to go with the flow (when I tell him it's time to stop, he always says "ok.") Despite his impending teendom, he is good-natured with relatively little attitude. 

And even when he's 50, I bet he'll still make me massage his shoulders while we watch TV.

Tantrum: A Time-Out From My Stinkin' Positivity

Every time there's some version of the meme "If only my life were like I make it look on Facebook," I laugh with a knowing nod -- and a little bit of a lump in my throat. I've always had a bit of a Pollyanna image (read: annoying bubbly person), so it's no surprise that I post positive things on Facebook. And I do and have a lot of amazing shit, so I'm not making up the stuff I say that makes my life look rockin' (and it is). The 7 days of positives excercise was cake...I could have written 1,000 more. As an aside, it's been a pleasure to read the ones from others who are, well, not always so positive.

So why the lump? Maybe because I know that when it comes to Theo, I paint a one-sided picture on Facebook. I talk about his beautiful mind, the sweet way he sees the world, his happiness to see his sister in the morning, his soothing voice and gorgeous face. I show not just Theo in the most positive light, but autism, because I want people to see that he's doing great and so am I. They don't need to feel sorry for us.

The reality is, no one nominated Theo to be the face of autism for my friends and family. I have so appreciated his support system on Facebook. Everyone loves an underdog, so when I post stuff about his small triumphs, he gets an outpour of love. And it's genuine -- everyone genuinely loves this kid, and should.

But then there's the shit I don't post. The stuff that wakes me up in the middle of the night (when I'm writing right now).

Last night was Theo's middle school orientation, and what did I post to Facebook? A photo of the incredible view from his school in LIC.

I didn't post how painful it is when we're in a room full of kids his age and the differences are so in-your-face. Look, comparing kids sucks. We shouldn't do it, but we do. I'm not proud that when I meet kids with disabilities a whole lot more severe than Theo's, I am grateful. "It could be worse" is a frequent commentary running through my brain, or spoken aloud with my husband.

But it could also be better, something I try not to think or feel or say. Most of the time, when his differences are not so glaring, I'm fine. It's just those damn occasions when he's in a room of his peers (so yeah, any time I've ever visited him in school, ever).

So here's what I didn't post to Facebook about middle school orientation. I watched the incoming 6th graders get their new schedules, check to see if they have friends in their classes, wondering who's in homeroom with them, hoping they got the teacher they wanted. What team will they try out for, what club will they join? Some kids were excited to be there, some nervous, some clearly unhappy summer was ending, but regardless of their emotions, they showed true understanding of what was occurring -- this new junior high journey they were starting.

Theo's big takeaway was that there are 8 periods in his new school instead of 7 (I never even knew there were 7 periods in elementary, but of course he did). This is not to say he is unaware of what's happening. He is nervous about middle school, and excited. He's glad he's taking the schoolbus because he's not ready to take a train himself, he says with a self-assuredness that's so wonderful to see. In general, I've been pleased with his age appropriate level of anxiety about starting a new school.

But as we sat there eating potluck dinner, I sighed as Joe had to constantly beg Theo to wipe his face and hands as he ate his meal like an animal, chicken grease all over him, everywhere. All I could think about was him sitting at lunch on a typical day and all the kids watching him eat this way, with no one to tell him to eat like a human being.

He gets therapy for so many things, so why can't anyone teach my kid to fucking eat? If you'd seen the looks I've gotten in IEP meetings when I've brought this up... as if to say, Your kid is way behind on reading and you want us to show him table manners?

After the teachers introduced themselves to the crowd, we had the chance to meet them individually. Like a nutty overbearing mom, I marched him over to the math teacher to gush about how he loves math, and the teacher was met with a few forced nods. Then I proudly told the music teacher about the theater Theo's done and how much he loves it. Excited, she asked what he likes best -- the singing, the dancing... He stood there bored and unresponsive, so she teased, "Or is it just something your mom sticks you in?" I was mad at him for making me look like an idiot, but really I knew I was pushing it and it was a bad time to be meeting teachers. He was tired and overwhelmed.

Sometimes I can't sleep, and like every mom, I think of everything I'm doing wrong. How does Joe take it all in stride? Why doesn't this stuff bother him? His response to all kinds of concerns is a simple "He's Theo, babe." And he's not being aloof -- I believe that he truly doesn't need Theo to be like anyone else.

You see it all the time on the autism blogs. "My child is special, and I wouldn't change him for anything." Well, on days like these when I'm mid-tantrum, damn straight I would change him. Damn straight I would want him to be the forbidden N-word -- normal. So there, I said it. I admit it. Sometimes it just gets so hard. This parenting business in general is hard. Pollyanna confesses she doesn't know what the hell she's doing.

Today we'll head to the Poconos and I'll have my usual smile on my face, and Theo will be happy because he lives for trips like these, and I will enjoy his pleasure. I will relish seeing him in his element, in the lake and the cabin and the woods getting good and dirty and smores-y like kids should in summer. Next week, I will post pictures of Theo in his new school uniform looking handsome as hell.

Theo is a happy kid. Maybe the happiest I've known. The things that bother me don't bother him, which makes me a jerk. Maybe I shouldn't have put all this in writing. Maybe I shouldn't share it with anyone. But for some reason, all of a sudden I couldn't stand that I was putting up a front on Facebook. Stupid, probably. Probably middle-of-the-night delirium. But here it is: the dark side.

Back to the Brain Doctor

Yesterday Theo and I returned to the neurologist we'd last seen Theo in 2009. In those days we visited a bunch of times in the span of two years, and those appts were always an emotional strain for me. As Theo and I sat in the office yesterday waiting for the doctor, Theo lined up legos in a pattern as he probably would have in 2009, only this time he was constructing an entire game in his head using the surrounding toys. This time he could tell me what he was imagining... I wondered what he was imagining when he was 5 and we first started seeing this doctor. The thought of it made me teary.

Then through the wall I could hear the doctor talking to parents in the office next door, and they were talking about the kid's noises, his gibberish. Parents starting out on this journey into autism. That got me going, too. The beginning is so tough. It's never easy, but when your baby is so little... man. I'm glad those days are behind us.

A few days ago, with the help of YouTube, Theo and Melody learned about autism and that Theo has it, along with some of their friends. He pointed out things in the videos that he could relate to--clothing tags bothering him, trouble communicating (I was shocked to hear him call that out), and, lol, liking video games and TV (I told him that was all kids).

Theo took the news great. Melody asked if autism was good or bad and I explained that it was neither. The conversation went as well as it could have, and I'm glad Theo understood we were going to a brain doctor to talk about autism. We needed an updated evaluation because this year, we start our apps for j...j...junior high. Phew, that was hard to get out.

The doc came in and Theo delivered a friendly but clearly jammed-into-his-brain "Hi, nice to meet you." The doc didn't remember us yet, but he read his old reports and could immediately see a big difference in Theo's attention and demeanor.

He sat and talked with Theo awhile, about how often he gets services in school, whether he's bullied, about his friends, what he did for his birthday. I was worried when Theo could not think of anything we did when we went to Mystic last weekend, a trip he enjoyed so much. But he does freeze up when he's in shy mode.

We talked at length about Theo, what my biggest concerns are... I mainly talked about his obsessive need for revenge when he's been wronged, and his desire for fairness. The doctor wrote this down and joked that his notes read like a novel tagline.

We talked about other concerns and he didn't think most problems I named were a big deal for his age. Occasional aggression at school didn't worry him since it's only occasional and we're dealing with it. We talked about stimming and how he still does it all the time but mostly during pretend play since his imagination is going all day and he's always creating games and worlds. He doesn't walk around flapping his arms anymore. The doc was thrilled. I complained that Theo is a messy eater and it doesn't bother him at all to have chocolate or something all over his face, and he chuckled that that's not autistic behavior. I agreed, it's pretty much the opposite of sensory issues, which he has none of other than disliking tags in his clothes. He's fine with loud music and noises and loves the theatre. I mom-bragged to the doc that he's great at improv and enjoys doing shows.

I gushed about Theo as the sweetest kid--an incredible brother, incredibly compliant, funny (the doc tested his understanding of sarcasm and jokes and Theo did well. There was a time he didn't understand jokes or expressions!)

During the appt Theo kept putting his legs up on the chair and I kept tapping them to indicate he put them down. I didn't realize the doc was observing me, too. More on that later.

He had Theo read a bunch of words that increased in difficulty, and occasionally asked their definitions. He declared him at an early 4th grade reading level, which sounds about right. A year behind sounds pretty good considering years ago I worried whether he'd ever read (or hold a conversation for that matter).

The doc drew some shapes for Theo to copy. I smiled when he said "good pencil grip." Years of occupational therapists working on this, and it's finally happening! But the lines were shaky and the shapes were terrible as Theo rushed through them. The next batch was better when he was asked to slow down.

Theo was asked a series of questions. "What animal gives us milk?" He said cow, and when the doc asked what else, Theo laughed thinking that was a joke. Giggle! He named some animals that lay eggs and answered a bunch of math questions correctly, including some that involved logic, which impressed the doc.

He said Theo's of average intelligence. In his old report, he'd written Theo was borderline. Wow. Not every parent is thrilled to hear "average," but this one was! He kept saying Theo was smart-; picture Forest Gump's face when Jenny tells him their son is smart, and that was me. He even wondered if Theo was aspbergery (his words) which shocked me, since I never saw him that way, and he said that time would tell. Apparently we'll know more when the hormones kick in. EEP! Puberty terrifies me!

By the way, this doctor is kind, personable, funny--and he's also blunt. He had no problem telling me years ago that he thought my GFCF attempts were pointless (he was right, thankfully) or that I was babying Theo (he didn't put it quite like that). So it took me off guard when he suddenly told me he'd been watching me, and he's delighted by everything I'm doing. He said it was just all so...proper. "I don't get a lot of mothers like you in here," he said. My throat went dry. Even now, thinking about it, I am on the brink of tears. I never feel like I'm the warrior mom my friends are and that I don't do enough for Theo. And here was an expert saying I'm getting it right. He said he wasn't just being nice (thanks to previous experience, I believed him.) He used my quietly tapping Theo's leg as an example, and said I'm calm.

Now, people tend to tell me I'm calm. It's nice to hear, but never rings true... I'm good at putting on a calm show. The only person who would never say that to me would be my husband, who's privy to watching me go off the rails with my children. But still, the doctor reinforced what I know but can't always implement...that Theo needs me to be calm and even, even when he's melting down. My frustration doesn't help him. This is true for any kid, of course.

Ultimately what I take away from this appointment are nuggets from the doc: that on the spectrum, Theo's autism is mild; that he's smart; that the difference between this time and last time is night and day. These are things I know. But it's nice to hear from not-his-mom.

Show, Not Tell

Sitting down with Theo to write an essay is tough; he's in the big leagues now.  He needs a thesis and he needs to support it. There are times he needs to give an opinion, and he asks me to help him, and I pull my hair out reminding him I can't tell him what he thinks.

He requires a good deal of prodding, but often produces something pretty special. For instance, last night his thesis was "Rain is the worst weather ever!" and as an example, he was discussing the suckiness of outside plans being canceled. He was supposed to go the beach, but then he saw it was raining. I used the lingo that's sent home and said "show, not tell." He thought about it for a minute and then smiled silly and wrote, "it looked like tears falling down from the clouds."

"Show, not tell" is one of the items on the writer's checklist Theo's sent home with. Without it, he's entirely stumped. He writes short, mundane sentences. It's interesting (and frustrating) to see how dramatically his writing improves with the checklist, that has stuff like

-strong lead
-similes and metaphors
-dialogue
-onomatopoeia
-5 senses (I write these out because he doesn't process things as well in broad concepts and needs to see specifics in front of him)
-other words for "said" (he's particularly good at this)

I'm really fascinated by this teaching method that manages to inspire creativity through rigidity. And  Theo's whole grade is learning to write this way; it's kind of satisfying that the "checklist" technique usually reserved for toddlers and special ed is applied to everyone. 

Theo doesn't have a grasp on how much is enough for each paragraph. An adult sorta knows OK, I've said everything I need to say here, so I'll move on. Theo is told 5 sentences per paragraph. It's a guideline, of course, but he takes it to heart. (Just like "read for 30 minutes" is a guideline but he watches the clock.) For now, it helps, because it forces him to write more than he normally would.

And even though he's good at implementing the stuff on the checklist, he has trouble knowing where to incorporate the various styles. That's where I come in -- "would this be a good place for dialogue?" He says oh, yeah! and then comes up with something that's usually on the mark.

I wonder how the checklist is working for the rest of the kids in his class.  It's a good method for Theo since he's such a stickler for rules. He takes the list very seriously, going through it at the end and checking everything off. I'm not sure to what extent he understands why those things made his paper interesting. Hopefully he will be so accustomed to this style of writing that it'll become ingrained.

Autism: Asset?

On stage in "How To Eat Like a Child"

I always have mixed feelings when the next "big autism article" comes out. I just read Gareth Cook's "The Autism Advantage" in the NY Times.

When I started reading, I thought "Oh great, another article about an autistic kid's special superpowers that will make me feel bad that Theo doesn't appear to have any." Remember, I struggled with this topic a couple of years ago in "Theo, What Are You?"

But I'm glad I kept reading. Cook thoughtfully conveyed the spectrum of autism -- while many of those affected are suited to technical-but-tedious types of jobs, they aren't all, and nobody's running a charity (and in fact it would be a disservice to those with autism to employ them out of charity, when there is, as we are learning, a niche for many of them).

Some nights I can't sleep because I'm worrying about grown-up Theo. Other times, on glass-half-full days, I feel confident there are attributes of Theo's autism that will be assets in the workforce. While he's not robotic, he's likely to tolerate repetitive tasks as described in the article. He will be punctual, remember his duties, and adhere to rules. Incidentally, this will also make him a kickass husband.

But is there a place for him to thrive beyond rinse-and-repeat labor? When I attended a lecture by Temple Grandin, I asked her how to find that thing my son is good at. She essentially said to just keep trying everything and see what sticks.

Theo isn’t a savant; he has no knack for assembling legos or machines, nor does he play chess masterfully like the kid in the article. But he does have a beautiful (and often outrageous) imagination. We have found theatre to be a decent outlet for him; improv in particular allows him to shine. I don't know (yet) how that will translate into career skills, but at least it's something.

I almost didn't publish this post because, reading it through, I realize it sounds like I'm shortchanging Theo, and that is not my intention. There is a reason everyone is crazy about this kid. So I'll do a follow-up post on his many strengths. This post was solely based on my realistic fears about his employable skills.

It gives me chills to think of heroes of today who are impacting Theo's future; I'm pleased to see Thorkil's work showcased in the Times. His business model could open doors for those who were previously underestimated to use their skills, or mainstream the idea that people with autism have some use beyond entertaining the masses with their quirks. Gives me hope for my bug.

*If all else fails, the back-up plan is to exploit him as a model.

Rant of the Mommy Homework "Helper"

In Confessions of a Mommy Homework "Helper", I wondered just how much homework help is appropriate. But that's just a part of the big problem, which is, how the heck is a parent supposed to find time to help with hours of homework a day?

I work full-time and am in school myself, my husband works around the clock, and my three-year-old is desperate for attention at all times, especially when Theo's getting all of mine during homework.

Not to mention the small details of getting Theo fed and cleaned after school. A bath is considered a triumph in this house. Keeping up with laundry and housecleaning are fantasies long since forgotten.

And because I'm a ridiculous mother who insists that Theo should have some fun in his life, he's in play rehearsals after school twice a week, which means by the time he gets home at 5, homework hasn't started yet. Theo must be in bed by 8 because he's on the school bus at 6:30 a.m., so that gives us three hours to make dinner, clean up dinner (ha! sometimes), do homework, and stumble through bedtime. And bedtime often isn't quality time with fun books and cuddles like it should be.

If we do get to read, it's usually one of the boring books he's assigned, since that's the only time we can squeeze them in. There are a few Roald Dahl books I'm dying to read to the kids that keep having to wait. And my toddler gets shortchanged, because I don't have time to read to her as much as I'd like.

I used to savor weekends for family time, but as the NYC Board of Ed views the weekend as two days that serve no purpose but 48 hours of available homework time, the assignments double and triple. (Notice I'm not blaming teachers.)

I thought homework was supposed to reinforce what was learned in school. So how did I end up giving my son a 3-hour lesson on Ben Franklin? And apparently not very successfully. If I -- a mom who works with words for a living -- can't get my kid to do a writing assignment, how are the non-English speaking parents doing it? Which is 90% of the parents in Theo's class.

Google tells me that plenty of other parents of third graders are fed up at the amount of homework their kids get and the help required from the parents.

I'm lucky to at least have a little guy who likes homework and who is always compliant. He even asks to do homework Saturday so he can play all day Sunday. I know many parents in my boat have kids fighting them every step of the way.

To all of you parents in homework hell, my heart goes out to you. And so does this rant. 

Did you know it's possible to learn stuff outside of school and homework? Here's Theo with the Metrocard train he, er, engineered at the Transit Museum.

Confessions of a Mommy Homework "Helper"

How did a grown-ass woman end up writing a third-grade biography on one of our founding fathers?

It was the third weekend in a row my 8-year-old had to write a biography for homework. And of course, in order to write one, he had to read one first. I pulled the Benjamin Franklin book out of Theo's bag and practically fainted when I saw its thickness. I glanced out the window at the first snow of winter, which had Theo in little-boy ecstasy as soon as he woke up. Sorry, snow, it's gonna be a while before he can play with you.

The book was on Theo's reading level, so I asked him to read it to me. It took 20 minutes to get through the first two chapters, and as I knew we'd never get to the writing portion at that rate, I read him the rest of the book. It took about an hour.

And so we sped through Ben's life. The printing press stuff, the invention stuff, the famous sayings stuff, the Declaration of Independence and Constitution stuff.

When we were finished reading the book, I asked Theo why Ben was important. "I don't know." I asked him what he invented. "A swimming machine." Yeah, buddy, when he was a kid. What did he invent as a grown-up? "A hot-air balloon." I sighed, partly with the understanding that of course those are the things that would interest a little boy, and mostly with frustration that he'd absorbed almost none of what we read in the last 90 minutes and we still had a whole biography to write.

It was very clear who would be writing the thing.

And so we sat at the table and worked on an outline of Franklin's life, and the topics we would cover in each paragraph. Or more accurately, I worked on it, but discussed what I was writing out loud so I could at least feel like we were doing it together.

Off we went, one painful teeth-pulling paragraph at at time. It would go something like this:

What do you think we should say for the introduction?
I don't know.
How about where and when he was born?
Yeah.
So where was he born?
Philadelphia.
No, that's where he lived later. Let's check the book. I open the book to the first page and he skims it, looking for the answer. Impatient, I just point at the answer.
Boston.
Yep. Write it down.

And in paragraph 6:

Why is July 4 important?
We go to Coney Island.
Yes, because it's a holiday. Why is it a holiday?
I don't know.
Because that's when the Declaration of Independence was signed. Do you know what that is?
No.
And so I explain and hope he'll kinda sorta put it in his own words when he repeats my explanation on paper.

The result was a nicely written biography that was no real indication of Theo's skill level. Had I done nothing, the bio would've read "Ben invented a swimming machine. The End."

I squeezed as much as possible out of Theo. Tried to make the homework as authentically from him as I could. But if I'm gonna be honest, I fed him a lot of the words--OK, sentences. And while I tried to check in with him on every piece and make sure he understood what he was writing, I'm sure if you asked him about the Declaration of Independence today, he'd still say he doesn't know.

I don't know what else to do.We highlight important facts as we read them. We discuss what we've read every page or two. But he is simply not good at processing large chunks of info at at time. If we could read one chapter a day and write one paragraph at a time, Theo might actually walk away knowing something about Benjamin Franklin. If Theo can't grasp an entire movie in one sitting, no way is he going to absorb an entire book.

I don't know where Theo's autism fits into this problem except that it accentuates it.

But I bet Theo isn't the only boy who can write 3 pages on Mario Party without help, yet struggles on a subject that isn't interesting to him.

Theo is a gifted creative thinker and writer. His imagination is one of his strongest suits. He'll wake up and decide he's going to write down his dream. He makes up wild stories for Melody every night at bedtime. He randomly sits down and writes plays, complete with roles for his friends and his sister.

It surprises me that reading and absorbing content for school is such a struggle for him. But that's the reality, and it's only going to get harder. I need to figure out how to get through this. I can't go on feeding him answers and pretending he's coming to the conclusions himself because I showed him where to find them in a book. It doesn't do him any favors and I certainly don't have the time.

As a mom of a kid on the autism spectrum, I want my son to be treated like other kids, I want him to advance in school on pace with his peers, and I want him to get assignments on grade level. So how can I then complain when he gets an assignment on grade level, and it's too hard for him? This is a parenting paradox that I deal with every day.

So tell me...how much homework help is appropriate?

 

P.S. Theo did make it to the snow. His insistence on a banana mouth turned out to be a great move.

He Did It

Here is a compilation of Theo's scenes from his performance in Annie Jr. with Unity Stage Theatre Company this past weekend.



You may recall my nerves when the rehearsal process began. Can he do this? The odds seemed stacked against him. Here was a little boy with autism in a giant space with 27 typical kids who were forming instant friendships and excited about their roles in the play. Theo was eating by himself and not quite getting what he was doing...there was a point when he thought he was playing Annie (because he really wanted to!).

In the beginning, he threw chairs, ripped other kids' homework, hit his castmates. He was so lost and confused that he acted out. If he didn't get a turn in a theatre game, he cried. I asked Sofia, the director, if I could start attending rehearsals with him, and she agreed.

His behavior was so awful at the first rehearsal I saw...I knew in my heart that we had to quit the play. And I cried for three days. But I couldn't bear to call Sofia and tell her. And in case you're wondering, I couldn't bear to blog about it here, either. I talked to Joe about it all week and consulted a couple of message boards, and at the last minute, we decided to give him another shot. Maybe the hour and 45 minute rehearsals were too much for him. What if we just stayed an hour?

So we went back. This time, we had a talk before rehearsal. We went through the list of rules. "Listen, no hitting, wait your turn in games," etc. I acted as a para for him. I did my best to remain in the background, but gave him a gentle push or redirect when he needed it. The next rehearsal, Theo turned a corner. We never did need to leave early. I think that talk we continued to have before rehearsals really helped. Theo does well when prepared for what's about to happen, and when he knows what's expected of him.

As he grew comfortable with the other kids, the adults, and the teenage assistants, his behavior not only improved, he was one of most cooperative kids there. He loved the theatre games so much that he sat focused and participated beautifully. He even became one of the boys. I remember the first time I watched the boys walk over to his table and sit with him. I think I had to cover my wet face with my hair.

When he finally got to rehearse his scenes on stage, he was over the moon. It was clear how much he enjoyed it -- not just peforming, but watching. While the other kids grew restless watching scenes they weren't in, he sat spellbound.

Theo now knows theatre lingo -- scene, rehearse, props, and director, just to name a few, are words he didn't know before.

To say we're proud of him doesn't seem to convey what Joe and I experienced. All the parents were proud of their kids. But when your kid overcomes as much as Theo did to stand on stage, say a few lines and do a few dances with a big smile -- no, pride doesn't even begin to cover it.

Sunday night, we laid in bed talking about Theo's face on stage when he said his lines, finally nailing them. He was beaming. We remembered the quintessential "Hi, mom" wave he gave when he spotted us in the audience. We talked about all the people who came -- so many friends, family members, and even two of his teachers. All the people who love him and are rooting for him. And we cried, because our son inspires us. We hope this story can inspire others.

Theo, What Are You?

If there were a lovebug aptitude test, Theo would score off the charts. He has achieved genius level with his ability to say things so sweet it's impossible to think the words are from a 7-year-old boy. An impromptu improvised song about his love for his little sister and her hugs and kisses, for example. His ability to cuddle, protect, and all-around send your heart a pitter-patter are at a level so high, his peers may never catch up.

But my Theo isn't a savant. He doesn't calculate complex numbers in seconds. He still can't add 5+3 without a number line. He can't compose music. After 10 months of piano lessons, he still struggles to plunk out Twinkle Twinkle. And he doesn't have a photographic memory, though his memory does surpass most kids his age, probably.

People who don't know about autism (and I surely would have raised my hand 5 years ago, so no judgment here) think of Rainman. An autistic savant. Someone who is genius but "weird."

But the truth is, obviously, that autism is a huge spectrum. Theo would be called high functioning, but with a below-average IQ (though I've never believed any of the IQ tests. I'm not in denial, I just know he  hasn't been tested properly because he doesn't respond well to that form of testing).

Temple Grandin, an Aspie (aspergers) woman who has basically revolutionized what we know about autism, says there are three types of thinkers:

VISUAL THINKERS 

These children often love art and building blocks, such as Legos. They get easily immersed in projects. Math concepts such as adding and subtracting need to be taught starting with concrete objects the child can touch. Drawing and other art skills should be encouraged. If a child only draws one thing, such as airplanes, encourage him to draw other related objects, such as the airport runways, or the hangers, or cars going to the airport. Broadening emerging skills helps the child to be more flexible in his thinking patterns. Keep in mind that verbal responses can take longer to form, as each request has to be translated from words to pictures before it can be processed, and then the response needs to be translated from pictures into words before it is spoken.

MUSIC AND MATH THINKERS

Patterns instead of pictures dominate the thinking processes of these children. Both music and math is a world of patterns, and children who think this way can have strong associative abilities. They like finding relationships between numbers or musical notes; some children may have savant-type calculation skills or be able to play a piece of music after hearing it just once. Musical talent often emerges without formal instruction. Many of these children can teach themselves if keyboards and other instruments are available.

VERBAL LOGIC THINKERS

These children love lists and numbers. Often they will memorize bus timetables and events in history. Interest areas often include history, geography, weather and sports statistics. Parents and teachers can use these interests and talents as motivation for learning less-interesting parts of academics. Some verbal logic thinkers are whizzes at learning many different foreign languages.

Theo definitely doesn't fit into two and three, so the visual thinker category seems closest -- though not perfect. I wonder if he really does think in pictures. His language is developing rapidly now, and little by little I get a clumsy idea of how his brain works. I am hopeful that he'll eventually find the words to express the machinations in detail, as lots of spectrum teens and adults do to support children in discussion boards, blogs, etc. It's an exciting thought.


By the way, if you haven't seen the movie Temple Grandin, see it immediately.


I'm hearing her speak at a conference tomorrow. She's the keynote at an Autism/Aspergers conference. I don't even pay $100 bucks to see people I like in concert, but the chance to see her speak was too incredible to pass up. I think one day it will be like saying you saw MLK or the like. Particularly exciting is that her mom will be speaking too; she will talk about what it was like to have a daughter with autism in the 50's, when doctors told mothers that they ruined their children by not giving them enough love.


Temple will be speaking about her new book on social skills. Theo's lack finesse, but he sure has the heart. The other day he said, "You know what I'm imagining? I have lots of friends and I keep them forever."


There is still so much more to learn about the pictures in his head. 

Annie, Week Two

Well, if I came off my last rehearsal pick-up on a high, today was the opposite. Last Tuesday when I peeked in, he was on his feet, part of an activity and fitting right in. Today, when I peered around the corner into the room, I saw all the kids in chairs learning a song, and Theo sitting there punching his head with his fist repeatedly.

This is a fairly new stim that has developed in the past few months, one that obviously Joe and I hate. I still don't know what triggers it--stress, nerves, anxiety, etc... Sometimes it looks like he's doing it out of sheer happiness. I guess I should be grateful that until now we've avoided the common autism stim of banging your head on the wall or floor, or other forms of self-injury. Theo's not injuring himself--not even close. He's just being silly.

I was happy, though, to see one of the teenage production assistants sitting next to him and working with him. Remember how I hoped someone would take a liking to him? I hope I'm not speaking too soon, but it seems like she has. It's her I spoke with after rehearsal and not the director. I'm too nervous to ask the director if he's being disruptive, because I'm afraid of getting an answer I don't want. And then I'm in the position where I have to decide if I do what's best for Theo (having him stick it out) or the rest of the kids (getting to enjoy their rehearsals without interruption).

The nice girl told me he was jittery and kept getting up, but that she sat with him and he sang. And that at snacktime he socialized with other kids. She seemed pretty positive about it.

So though I'm bummed, we all know there are good days and bad days with autism. Hopefully next week will go better. I realize he still has to get used to this. And he really, really loves it.

And I have to work on my own attitude. I keep hoping for things that will take time, if they happen at all. I shouldn't have expected him to tell me which girl is playing Annie so soon. I shouldn't have hoped for him to have an instant theatre buddy who would stick to his side during rehearsal. It's not fair to him for me to be anything but realistic, but it's also not fair to him if I underestimate him, so how do I know how to push him the right amount?

Remember When We Worried He'd Never Do Pretend Play?

Kids pretending to make pizza:

Theo rolls out his imaginary dough and says "I'm putting flour on the board so it won't stick.*" Then he gets his Spiderman winter glove and puts it on to take his pizza out of the oven.

"Melody, be careful, it's hot. You don't want to get burned!"


*Aunt Pia, I think you get credit for this bit!

I Want

Reconciling the tears of happiness and tears of grief caused by these two little words

When I met Joe, I told him we would raise our kids to be little Charlies. As in, the little boy from Charlie and the Chocolate Factory by Roald Dahl. Charlie's family was so poor that they saved  up all year to buy him a chocolate bar for his birthday. Bursting with gratitude, he begged his parents to share it with him. Of course, they refused. Instead, he made the chocolate bar last for weeks by unwrapping it every night and allowing himself only the smallest taste. He never wanted anything, as long as he had the love of his family.

My plan to have a Charlie of my own went out the window when Theo was diagnosed with PDD (Pervasive Developmental Disorder) at 2. He didn't speak yet, so therapists came to my apartment 4 days a week to pry words out of him. The main focus was to get him to voice his needs with the words "I want."

After months of work, Theo eventually learned to say "I want ___" before his therapists would hand him the toy or puzzle piece he asked for. But outside of therapy, he never asked for anything. In school, he would sit there until someone offered him milk, even if the rest of the kids had already lined up for theirs. His cousins would beg for toys they saw in commercials or demand flashy cars in the toy store. Theo asked for nothing, content with whatever we gave him.

Forget about my notions of the selfless Charlie. I wanted Theo to want. If he'd asked me for every toy in the darn store, I'd have given them to him.

Now, at almost 7 years old, Theo has no problem voicing his desires. And his requests are usually so simple and sweet, I'm happy to honor them. A new kitchen stepstool for Christmas so he and Melody would no longer have to share one. A pack of Uno cards. A lollipop. If I do get the rare big request, like going ice skating, you can bet we're going ice skating.


And now I switch gears to discuss kid number two. I always dreamed of having a boy and a girl. When I learned I was having a girl, already having had my boy, I only had one more wish -- for her to be neurotypical (a crummy word, but that's what we say in the special needs world). I thought if I could have that, I wouldn't complain or ask for anything else. Wish granted. When Melody started talking, out poured our tears of joy and relief -- particularly when she began to say "I want."

And boy, does this terrible two-year-old want.

From the moment she rolls out of her bed (currently a mattress on the floor because she wants...to not be trapped in the crib) she climbs on top of me, grabs my face, and starts hurling demands. "Hey, mommy. I want milk. I want juice. I want water." (Yes, she really does want all three. At the same. time.) Sometimes, if I'm lucky, she'll throw in a "Good morning."  Then it's all whining, all the time, for the rest of the day, 'til she loses the fight against sleep.

I spend my precious little time with my daughter either giving in to her demands (after squeezing out a "please") or ignoring her while I let the tantrum run its course.

And I think about Charlie. Where is my Charlie?

I want candy!
I want ice cream!
I want to go that way. No, thaaaaat waaaaaaaay!

I want. I want. I want. Melody's sense of entitlement grates on me. At the height of my grogginess, and therefore my flair for drama, it makes me fear for her future. What if she becomes one of those obnoxious spoiled brats who make my single friends not want kids? What if such a monster is spawned from me? Me, to whom good manners, gratitude and humility are so important!

Then I remember the promise I made. I'd never take it for granted if Theo would just talk to me, or if Melody could just be a regular kid. He does, and she is. She really, really is. And I pull them in close -- my special boy and my beautiful brat -- to make a demand of my own.

"I want a hug."

"Please."