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.  


Nancy said...

It's funny how our "new normal" becomes so...well, normal. If you stop and listen to yourself and watch what you are doing, you realize it must seem bizarre to other people. I am always telling Erik to chew, chew, bite, bite...because he still doesn't know how to eat a sandwich without choking. I just went back and read a few blog entries about me taking him to the playground, and it broke my heart.

Thought I'd share my fave quote on grief. It really never goes away, does it?

She was no longer wrestling with the grief but could sit down with it as a lasting companion and make it a sharer in her thoughts.

~George Eliot

Holly Nappi Collins said...

This was a beautiful post. I found your blog from another.. and I wanted to comment. I have two kids with autism (now teens) so I been through quite a bit, and this post brought me back many years ago. I think your description of grief is true, you have moments of pure joy, then frustration and crying...

Amy said...

Sometimes I forget I am grieving, anymore. A couple weeks ago I just cried and cried and couldn't figure out why. My boss had to remind me. I have just become so USED to it.
Love your posts!

Tes said...

I am still dipping my toes into groups wondering which one I will fall into, haven't found it yet.

Ava Jewel Leilani said...

Your post warmed my heart, thank you!

Happy Holidays!

Hugs Anna & AvaJewel

Courtney said...

Hey, girl...saw your comment....and, no, we're not finding out. We'll know when the baby gets's driving everyone crazy, but I found a wonderful sense of peace about it. My body is so busy chasing after one baby and creating another, that I don't have the energy to plan a nursery, shop for clothes, etc. I'll take care of it later....everything is later.

Love seeing pics of those adorable boys. Clinton and Ace seem to offer us similar challenges...ALL BOY! Clinton is wearing me out! Hope y'all had a good Christmas.