Red Behavior

There's a new sheriff in town and her name is The Color Chart. Employed in kindergarten classrooms across the region, she is an imposing tower of color blocks that rewards children by bestowing her color goodness to the um, behaved.

BLUE for the exceptionally well-behaved, You went beyond the call of duty.

GREEN for fair to middling behavior, You are doing a good job sitting still.

YELLOW for poor behavior, Don't hit Billy, he's crying.

RED, for bad behavior, You did not listen despite the 323 warnings you were given, and now you must sit there with that red glow around your head so that all can witness your shame.

So if I'm good, I don't get that new Thomas train but instead I get to move up to blue? YAY!!

Did you get that? The reward is not a toy or bowl of chocolate ice cream, it is a color. This is genius.

It works like this: the kids arrive at school in the morning and all hang out together on GREEN, each on their own clothespin, each with a fresh start and the possibility of moving up. Of course that means there's also the possibility of moving down. As the day goes on and as it perhaps gets harder to sit as still or stop yourself from blurting out your every thought during circle time, your pin might begin its downward travel.

I've been volunteering in Sam's classroom every week and I rarely see anyone on red. (Although I know a few sometimes land there because Sam likes to tell me which friends went where that day). I say this is genius because when you have a room of 25 kindergarteners and spend any extended length of time with them, say more than 10 minutes, all you want to do is put your head on a pillow and gouge your eyes — that's how exhausting it is. The teacher is a saint and I can't believe she not only shows up every day but that she smiles the whole time. The Color Chart, you might say, is her assistant teacher.

So Sam came home one day and said: "Mommy, can we have a color chart here?" I know I've said it already, but Genius!

We found sheets of construction paper and made our own sheriff. Since we were out of red, we used "our imaginations" to make peach-colored paper red. The only problem is that the Sheriff has been a pain in my butt. Sam talks about it non-stop. "Mommy, I got out of bed, can I move to blue?" "Look! I ate my oatmeal, can I move to blue?" "Mommy, John didn't listen to you, I'll move him to yellow." I'm not sure why John is on blue here and Sam on green, but I'm guessing that Sam will change that soon. Today, I can't remember the infraction, but I threatened to move him down to red and HE threatened to run away.

The new sheriff? Pretty powerful stuff, but perhaps too much like crack?

Glasses

I have always had perfect vision — that is until I entered my forties and found it increasingly difficult to read small print. Funny how all text everywhere suddenly seemed to get smaller and lighter. It was a revelation when I put on my first pair of glasses: I could see!

Hearing that I needed them came as a shock and trying on pair after pair was an out-of-body experience. None looked right, the image in the mirror was of some freaky, alternate version of me, and I wasn't at all sure I liked seeing hints of my mother staring back. I was conservative with my first pair: simple wire rims with rectangular lenses. It took months before I stopped doing a double-take every time I passed a mirror.

I was reminded of that today as I watched Sam try on pair after pair. We just found out he needs bifocals. Bifocals! Over the years, one or two people may have said it looked like he had a lazy eye. It was not something I ever really noticed and he's always been such a great reader — I didn't think it was anything serious. Then a few weeks ago, his new O.T. called and said she definitely saw it while working with him so I made an appointment with a pediatric opthamologist.

Bifocals for a 5-year-old? Turns out he has trouble focusing with both distance and up close and a pretty pronounced lazy eye. There's a chance he could outgrow the need for them, but I feel awful that he's been struggling all this time.

When we first got to the store, he refused to even look at frames. Then we found a blue pair and although he liked them, he refused to put them on. After much cajoling, he allowed me to hook them over his ears but as soon as he caught a peek of himself in the mirror, he covered his eyes. I knew, of course, he was seeing the same thing that I did the first time I tried on a pair: who was that stranger looking back?

Never mind that he looks adorable in them. Never mind that I'm told by my popular, 15-year-old stepson that no one teases about glasses anymore (really?), it's hard not to worry — he is already so quirky, will he be teased for this too?

So yes, eventually he started trying on one pair after another, laughing at each new look. He did not like the simple gold and silver-colored rims the store manager was pushing. He called the pair we ended up buying his "Superman glasses": thin black rims with a hint of blue on the sides.

Superman, indeed.

Spelling Bee

Tired after a long day at school, a day that began at 3:30 a.m., he crawls into my lap, seeking a place to unfurl. His limbs are heavy and I hug him, breathing in the softness of his hair. "H… U… G…," I say, "spells HUG," I say and squeeze him again. He cocks his head to the side and studies my mouth.

"K. I. S. S.," I try. "What does it spell?"

"KISS!" he says. I shouldn't be surprised, Sam did this years ago, but I am stunned.

"C. A. T., spells?"

"CAT!" he shouts, now sitting up.

"H. O. R. S. E., spells?

"HORSE!"

"B. L. U. E.?"

"BLUE!"

Surely this is an advanced skill, to be able to hear the letters, visualize them in his head and then come out with the correct word?

All the times I thought I understood my son's limitations and talents. All the times I've feared he wasn't learning much. All the times I've read a bedtime book and allowed John to push it away. All the times I thought, Fine, Sam is the reader, not John.

All those times? I was wrong: I don't know a thing — other than my love for that little boy is immense.

Potty Redux

Last night John came running to our room at 2:30 a.m. There's nothing new about this, he's been doing it (again) for months. Usually the impetus is a flooded bed and like robots we haul our leaden bodies out of bed and tag-team the changing of him and the sheets. Maybe 4 out of 10 times he will fall back asleep, but the norm is a cacophony of noises, laughter and silly talk — followed by the return of him pounding back down the hallway every 45 minutes or so when his music ends. It doesn't matter that we've put the CD on "Loop" so that it plays continuously — as soon as he hears that last song, he's up and running down the hall.

But this time, although he still careened around the corner at his usual hour, I brought him to the bathroom where he Peed on The Potty: a Major Project in progress. His bed was dry, he returned to it gladly and in his little voice, asked, "Lullaby music?" I hit play and made sure it was on loop, then padded back to bed. Alas, 45 minutes later, he stood by my side.

You would think that relieving his bladder and staying dry might encourage returning to sleep. But the sad, sad truth seems to be he doesn't require as much sleep as the rest of the world. We've tried letting him pile in between us, but he's still manic and ready to DJ a party. I don't understand it, it makes me an irritable angry bear of a mom the next day, which lately is most days. If I've made the unfortunate mistake of staying up until midnight, which I do too many nights to count, then by the time John has decided he's up for the day, I've logged just 2-3 hours of shuteye and then borrow it in 30-minute stretches until I give up.

***

Here we are past fifth birthdays and as I feared, John is still not potty-trained although obviously there has been progress. A few weeks ago, his new team took on the challenge of training him while at school and he's been successful. He stays dry and in underwear for the entire school day. When he gets home, it's my job to take over for the three hours or so before bed which involves lots of "first pee-pee, THEN itouch" and "first pee-pee, THEN the most expensive toy in the house" type bribes. And he goes, lately he goes for The Elephant Song and really gets the cause and effect of "pee-pee in the potty."

But he doesn't seem to care. Pee in his pants or in the potty? Either is fine by him. I don't know how he can ever be fully trained if he doesn't make a major leap of self-awareness: I don't want to soil myself.

And then there are times like yesterday. In the middle of the day, John took me to his room and asked for "Lullaby music?" Grinning, he then pulled me to his bed and hugged me fiercely. We cuddled and I listened to him chatter to his stuffed animals, ever mindful of the sheets. After some time, longer than 15 minutes, I took him to the potty where he went. He tried to pull me back to his room and I told him that Mommy had to run some errands and that Daddy would be up. Upon my return I heard that at the 15-minute mark, Twins Dad had entered John's room only to find that he had completely soaked his sheets.

It made me really despair, until I realized at 2:30 this morning that a little boy who was capable of holding it until that hour, had perhaps deliberately soaked his sheets because he was mad at me for leaving.

Possible? I think so, and that is something. Although the fact that he cared more about expressing his displeasure than being wet — we still have a dilemma here. Anybody out there face something similar?

A new way to look at it...

Several weeks ago, I was the lucky winner of a beautiful poster from the Rugh Family Workshop via Autism Vox.

Jamie and Jeffrey Rugh are a New Jersey couple with two children on the autism spectrum and artistic talent to spare. Their posters are vibrant and unique and are being produced to promote awareness, support and compassion for people with autism. They plan to add new posters every few months and all are limited edition silkscreens. Some have quotes by people such as "The Horse Boy" author Rupert Isaacson and musician Dan Zanes. Prices are $15 to $25 per piece, and a portion of the proceeds will be given to an organization that supports adults and teens on the spectrum through education and advocacy. You can read more about them here.

Thank you to both the Rughs and to Autism Vox for our poster,"For Charlie." It's a lovely addition to our already colorful home!

Clouds in the Sky

I'm straddling two worlds. Here I am in the NT world, walking my son to school, chatting with other mothers about reading levels and volunteering in class and play dates. And here I am over here walking my other son to his bus, his hands flapping with excitement as it rolls up, handing the aide an extra bag because we're working on potty training at school this week and it requires daily replenishing of dry clothes.

The two worlds collide in a way that surprises and unmoors me. Sam has been invited to a classmate's house for a play date that I have yet to schedule because of John. The other mom knows of John but has never met him, and so instead of tackling the issue, I hedge. What will I say? Can I bring his brother, oh his brother has autism and will probably perseverate in a corner... could Sam come over to play by himself? And do I really let my 5-year-old with his own set of issues go to the house of someone I barely know?

How do I manage John's needs with Sam's increasingly more neurotypical ones? Just the fact that he's already making friends at school tells me that he needs to have as many of these experiences as possible. Especially since the perceptions that some seem to have of him make me squawk with indignation.

Like at back-to-school night. I approached Sam's teacher to say hello and to tell her that after hearing about their day, I now understood why he was obsessed with drawing and cutting out clouds. He always seems to process the things he's learned by recreating it as soon as he gets home. She greeted me warmly and said, "Sam is so smart! What a unique way he has of seeing things. When he shares his ideas in class, the other kids always seem to get it."

Another mom was waiting for her turn to speak with the teacher and overheard our conversation. Later she said to me, "Wow, Sam sounds so smart!" I agreed, saying something about how he always surprises us. Then she asked, "Is he smart like Rainman?" I'd like to say I had some witty comeback, something to make her wither like I did on the spot. But I was so taken aback that the most I managed was "Uh, no."

It made me immediately regret being open about our road to diagnosis back when they were barely two. There are too many people who only know the label. Too many whose expectations and impressions are already tainted by a word, a word so loaded in this age of Jenny McCarthy and Autism Speaks, that we butt up against ignorance all the time. Next thing I know this mom will see the latest Autism Speaks video and assume that's what my life looks like and it infuriates me.

Here's the thing: autism is just a word. It's a word that encompasses too much in my opinion. Autism is a spectrum of disorders and no person has the exact same chaotic mix (even my identical twins). Autism Speaks would have you believe that not only is autism a dark menacing cloud, but a black vise imprisoning our children. Yes, they want people to contribute money to their cause. Do they need to instill fear and spread misconceptions in order to do so? Can't our lives, challenging as they no doubt are, be represented without alienating the autistic community and a good number of parents as well?

What about the parents of the newly diagnosed who are looking for hope? What about my own children? What if Sam saw this video and thought that's who his brother is? What if another child said to him My mom says you have autism like Rainman, and he thinks of himself this way, as someone with something that other people would wipe out? What about all the others out there, not bad people, but people whose only knowledge of autism is the version spewed by Autism Speaks?

Yes, I often feel despair. But this video left me feeling the worst despair I've felt in a long time.

No, our lives have not been easy, but whose have? There is no doubt that autism has set us on a course we could never have imagined, but now that we're on it, could we imagine another? You can't separate autism from my boys any more than you could separate clouds from the sky. Depending on the light or your perspective, those clouds are either menacing and dark or beautiful and an intrinsic part of the picture.

Some days they are both, I am human. But if I lived under that dark cloud all the time, what kind of mother would I be?

How about instead of the fear-mongering, Autism Speaks works harder to talk about the therapies and supports that could make my boys' lives easier, not more difficult? No? How about the creation of a new organization that spreads a kinder message of inclusion, hope, and acceptance, that educates others on autism's many facets, both good and bad? That would be a group I could put my support behind, that would be a message for which I would walk on the National Mall.

Autism is not the reason life is hard. Life just is. It can also be spectacular and has everything to do with how we feel on a cloudy day.