Friday, December 19, 2008

April is the Cruelest Month.

I love winter.  Truly, I love it.  T.S. Eliot explains it much better than I ever could in The Waste Land:

April is the cruelest month, breeding
Lilacs out of the dead land, mixing
Memory and desire, stirring 
Dull roots with spring rain.
Winter kept us warm, covering
Earth in forgetful snow, feeding
A little life with dried tubers.  

If only I felt the same way about the holidays.  You may or may not know...I have issues with to-do's.  And with the holidays come automatic to-do lists.  It's inevitable.  

The gift-buying is the most stressful.  I'm working on letting go of the pressure to buy the perfect gift.  It really is the thought that counts.  I'm also trying to be okay with not having everything done RIGHT NOW.  

Unfortunately, the battle continues with the voice that repeatedly tells me "you really should be doing ______."  I want to enjoy this time with my family.  Louie is on Winter break and we can switch off the alarm clock.  

The tree is lovely and makes things feel peaceful, especially at night.  Christmas lights make everything look better.  I may be about to go into an old-school Christmas light phase where I keep them up year-round, tacked to the walls like we did in college.  

My boys don't understand Christmas yet.  They'll enjoy opening gifts and they have certainly enjoyed the tree, at the expense of glass ornaments and my patience.  This tree has been rocked.  Really, rocked.  But it's still standing.  And I'm still yelling out "Hands off the tree!" twenty or so times a day.  

We went to Louie's Christmas party at school yesterday.  All of the kids in his class have autism and four are on the diet - gluten-free casein-free -  so it made sense just to serve GFCF foods at the party. Surprisingly, it wasn't that bad.  The sugar cookies tasted like sugar cookies and there was a delicious and strange Chex-type mix made with agave syrup (or something like that).  We were promised ham but it was forgotten (that's okay Janese!). We also had grapes, Veggie chips, Tings (Cheetos without the cheese), plain - no butter, oil or salt - popcorn and juice boxes.  Nothing says Christmas like GFCF cookies and ham.  We laughed about the random assortment of "party" food.  We're pretty sure none of the other classrooms offered such a variety.  

If you ever happen to stumble upon a classroom of kids with autism having a Christmas party, you may not notice anything different.  Upon first glance it looks like any other party.  But under the surface, if you're paying attention, you can begin to feel the forceful current that is called autism.  

An eerie silence lies beneath the buzz of parents and teachers greeting one another and setting out paper plates. It's more what you won't hear that defines the difference.  You won't hear a child telling a parent to "look here, watch me."  But you may overhear a parent complimenting their child for good eye contact.  There won't be any loud arguing over toys but you won't hear the busy chatter and laughter of children at play either.  

I overheard one of the children say his own name when looking at the picture of himself inside the frame he had glittered.  "Great job!  Good talking!" his dad exclaims.  Another parent praises Louie for responding to his name with eye contact.  

It's these most natural behaviors that children with autism and many other development delaying syndromes often lack.  I find it difficult to get my head around the idea that I have to teach Louie how to learn, how to play, how to speak, how to express love.  And now that I have Ace for contrast, I am seeing exactly how natural these things are in typically developing children.  

There are times when autism is all in your face and it's loud and can't be ignored.  But for the most part, it's terribly silent.  I still find it difficult to see it in the other kids in his class.  In passing, it can be missed.  This must be why so many aren't diagnosed until later, often not until they start school.  

Autism is fascinating.  The strengths and the extreme deficits.  Then add in Williams syndrome and you've got a syndrome commonly associated with over-friendliness fighting with autism's typically unsocial behavior.  These battles and others play out in Louie every day.  

Being around those parents at the party felt comfortable, almost soothing.  We share a similar story and experience many of the same challenges.  As parents of preschoolers, we're all fairly new to the diagnosis.  Beyond the silence you can see autism if you're looking for it; the same goes for the parents in that you have to look beyond our thin veil of composure to see the throbbing vein of grief that runs below the surface.  

My neighbor asked me about grief today and then quickly apologized as though she'd said the wrong thing.  I told her that she was right - it certainly is a grieving process.  

Grief is sneaky. I've been enjoying many days in a row where I feel like "hey, this is no big deal at all.  I have everything totally under control..." And then, Grief arrives, an unwanted house guest with tears and lumps-in-throat for everyone.  I am happy to say though, that with each passing day, Grief visits less often.  

There was no Santa at Louie's party.  No singing or art projects.  Just a bunch of self-proclaimed misfits...the teachers and parents, the kids.  All of us.  I can't speak for them, but I have never felt more like I fit in than I did then, at the Christmas party for preschoolers with the label of autism.  

Tuesday, December 9, 2008


My friend emailed me regarding my last post about my frustration with electrical plug outlet covers. She let me know that her friend put a pair of scissors in the electric outlet and dislocated her shoulder when she was four. Yikes! Thank you, my friend. I needed a real life story to scare me into keeping those things on.

I'm definitely not looking for any extracurricular injuries or electrocutions. My hands are busy applying triple antibiotic ointment and calling the pediatrician after-hours clinic. Yesterday, Ace fell head first down the kitchen steps leading to the garage. Then he dropped a log on his toe. I told him to stop pounding that log on the floor like a jackhammer.

This goes on all day. Average number of "oh, Ace, you bumped your head!" - I'm gonna say five? Sometimes ten, sometimes four. Never less than four. And always with tears and toothy, hold-me-mama cries.

Ace pushes the limits every day. He stands atop of a flight of stairs, one leg dangling in front of him, dare flashing in his eyes. That look of mischief, that look that I keep trying to ignore. That look doesn't go with my please God, give me a geek plan.

It's been there since day one. Others notice it too. I'm trying hard not to say anything about it, to draw too much attention because I feel like people grow into the words by which they are defined. If someone tells you how funny you are, more than likely you're going to think you're funny. If your parents tell you that you are wild, wouldn't you tend to be more wild?

I don't even like to talk to Chris about the look too much. But sometimes I can't help it; I want to try and figure out how we, we of all people, got this kid. A daredevil, mischievous, I-cannot-walk-because-running-is-my-only-option, gregarious child.

I know I have to let go of my dreams of him being a geek. Of us sharing the same novels and of him as a teenager staying home every weekend night. To study. And play computer games. He might indulge in Coca-Colas and Reece's peanut-butter cups since he would be staying up late - 10:30 or so. I need to stop.

Really, it's okay. Don't get me wrong, if that does happen, I will be giddy with mommy-giddiness. But I'll prepare for the story his eyes tell. I have a suspicion his story is going to be more fun anyway, wouldn't you say?

Louie is nothing like this. He's overly cautious and careful. Which is why it hurts in more than a physical way when Louie falls. He fell off a bench the other day, landing flat on his back and head. His protective reflexes are not very good and in many cases, nonexistent. Louie's head smacked the wood floor with a flat sound. Like a rock was dropped to the floor. He just lay there, a bewildered look in his eyes. He doesn't understand. No child does but to Louie, it's a breech in trust with his relationship to the world.

Louie has never bled except at the doctor's office for blood draws. His accidents are few and far between. Maybe he understands his limitations or maybe he's just scared, but either way, he doesn't take physical risks.

My life is a constant opposite, a stark contrast of light and dark, on and off, Louie and Ace. I will try my best to keep the plastic covers on the outlets, to keep the gates on the stairs closed. I pledge to not leave them alone in the tub. I will work hard to channel Ace's boundless wonder and curiosity. And push Louie to develop his. I'll tell Ace not to mimic everything he sees and jump up and down when Louie claps his hands when I clap mine.

On occasion, they come together in harmony, two notes, high and low. It's not often, but occasionally they do find calmness in being together, beside one another, maybe just to hear about what Elmo is thinking about today or about a comb and a brush and bowl full of mush for the 992nd time.

Ace is growing, developing, learning and surpassing Louie daily. It's happening right now, right this minute, today. They are wearing the same size clothing (lately, with their similar size, people always think I have twins, especially when I have them in the double stroller. It's funny how people clear the way and say "oh you have your hands full!" even though they also have two kids.). For today, they enjoy many of the same books and activities. But in terms of development, Ace is far beyond in expressive and receptive language skills. In many ways, a lot of the surpassing is behind us. I knew it would happen. I know it's happening. I am prepared.

Instead of feeling upset about missing these milestones with Louie, we like to tell ourselves that Ace is just exceptional and amazing in his human development skills. We really believe this so please, I beg you, don't burst this bubble.

Ace sometimes mimics Louie's unusual behaviors like covering his ears and yelling "eeeee". However, he quickly gives up and often stares at Louie like "I don't understand you, I sure can't figure you out but you are pretty much the coolest person I have even laid eyes on. Ever. Ever."

He still follows Louie everywhere. He likes to wear Louie's wrist sweatbands that he uses to wipe his drool (thanks Amy!). He pretends to wipe his drool even though he doesn't have any. Ace brings me Louie's braces to put on his own feet. I tell him to be thankful his arches are perfectly fine and that he doesn't have to wear braces but end up putting them on him for a minute anyway. Because whatever Louie does, wears, "says", is what Ace wants to do, wear and say. And so it goes with siblings.

There is something to be said for preparation. From the moment I knew I was pregnant with Ace, I knew Louie would be developmentally left behind by the unborn baby. I have been ready, armed with emotional ammunition. Bring it on developmental milestones. Bring it on.

I still have a lot of work ahead of me. As all parents, we worry about the futures of our children. There is only so much we can do to prepare. And some things, I don't believe you can prepare for at all.

There will be a day when Ace realizes that Louie is different. That he stands out from the others. Won't that moment come? How could it not? As a parent, how can I change the norm, alter the perspective so that different is beautiful and standing out is the only way to stand? I suppose that is my assignment. My preparation.

Wednesday, December 3, 2008


I hate, and I hate to use the word hate, those electrical plug outlet covers. I hate them. We have the cheap kind that take some type of kitchen utensil or a power tool to pry off. I always try, and never succeed, to use the plug for whatever electrical device I am trying to use, key word try, to pry off the cover. In the process I usually bend up my plug pretty good and have yet to get a cover off using this method.  But every time, I think "I'll just try it real quick, maybe it will work" as I stick (and bend) one of the plug prongs between the cover and outlet.  For some reason these safety covers are starting to sound more like hazards to impatient parents such as myself.  

So,then I proceed to curse it and stomp off to find the appropriate device necessary so I can get to my electricity to finally do the vacuuming that has been procrastinated to the point of the kids snacking off the floor, "Yum, a dried pea, oh looky here, 3 raisins and a half an animal cracker."

I've seen those pricier outlet covers and now that I've built up so much rage against these plastic pieces of frustration, I feel the investment would be worth it. However, this brings up another point. And please, if you or anyone you know have children who have been injured in an electrical plug incident, I mean no disrespect. It's just that I personally don't know anyone nor have ever heard a story about one of these types of injuries. Not a friend of a friend or a cousin of your best friend's sister-in-law's sister. But let's keep in mind I've only been a mom for three and a half years and paying attention to plugs and plug related injuries. Well, obviously not paying enough attention. Are we worried about them getting shocked? And how bad is the shock should it happen? Is it life threatening? Should I have consulted Google before asking these questions openly - out loud and in writing? It may not surprise you that my husband is the one who took all the plug protection measures around here.

Enough about electrical outlet covers already!  

Ace has started singing. His favorite song is Baa Baa Black Sheep because he can sing the Ba Ba part. But then yesterday, I hear "uh oh oh, uh oh oh". Perfect melody. There was no denying he was singing Beyonce's Single Ladies. If you liked it then you should have put a ring on it. Oh well. Beyonce is not typically my kind of music but since she's been everywhere promoting her new album, I've decided she's okay. Uh oh oh, uh oh oh.

Louie is doing fantastic. Really coming out of his shell. He is with us. Really with us and it's a joy. He is a joy. He's a 24-pound skinny thing but gives hugs with the strength of a boxer; a hug that carries all the words he can't say, all the love in the only way he is capable of giving it. Isn't it interesting that many of us neurotypical people, with excellent verbal skills, fumble around for the right words but still can't come close to carrying the weight of Louie's hug? For me, his hug says it all. And quite simply, I've never felt so loved as when he wraps his string bean arms tight around my neck and buries his drooley, wet face in my hair.

What a roller coaster post. I started off hating the world and all the electrical plug safety covers existing within it to the power of hugs. Blah and peace, signing off...

- J