Wednesday, August 27, 2008

Hot-Wheeling in Holland or Wherever We Are.

I came across this quote I had scribbled on a piece of newspaper but I can't seem to find where I found it or who it's written by.  I wish I could say I wrote it myself, but I didn't.  I Googled and Googled and found nothing.  If anyone knows, please advise.  

"...thankful for these walls.  These walls that contain my unpredictable, crazy, sometimes messy, lovely life."  

As you may have noticed, many of my posts contain within or end, with my desperate attempts to find the lovely parts of life.  Just so you know, I'm not this positive person always looking on the bright side of things.  In fact, many times I'm quite the opposite, clinging to a string of hope I hold loosely in my sweaty hands.  Trying to shed a coat of bitterness I wear year-round.  I'm always trying to make sure that no one thinks I'm feeling sorry for myself.  And I don't want others to feel sorry for me.  

As Penny, fellow blogger with a son who has the same dual diagnosis of Williams Syndrome and autism that Louie has, commented on my last post, we just don't know where the WS stops and the autism begins.  I am in the process of preparing myself for the possibility Louie will never talk.  I had a dream he spoke last night.  Don't remember much of it.  Don't know what he said.  Just that he spoke. Leaving me today with a formidable, raw feeling of hope and dread and awe and realization.  

Most parents who have a child with special needs have read the poem Welcome to Holland, an apt metaphor.  But I'm not in Holland.  I know the name of Holland.  I'm pretty sure I could locate it on the map.  In the very least, I could find the coordinates.  My family has been uprooted and placed somewhere far, far away from coordinates.  The land where those people live that you spend most of your life thinking, oh that only happens to other people.  Until it goes and happens to you.  Special needs? Huh? Williams Syndrome?  What? Who?  Who is William?  Autism?  Mentally what?  

I don't know this terrain; I am not familiar with its climate.  I'm lost and there is no map. I don't know the rules and they're not posted anywhere.  I have no idea if this place will mend my soul or shrink it and shrivel it to the size of a raisin.  I hope not.  I think that's up to me. Because the one thing I do know about where I live now is that we are at war here.  At war with ourselves.  An odd war, because you're fighting to find the fight within you; enough to fight for yourself and your child.  To navigate the turns and bandage your wounds.  And somehow surrender to or conquer the Battle of Shock and Darkness.  You know many who live here. Sometimes I wonder if it's not a faraway place after all; not Holland, not Italy.  Or the United States.  Just here.  In the world.  In which we live.

Speaking of battles, we had one with Louie a few weekends ago.  After a year with that walker, Louie decided he would use it.  Use it and abuse it.  Rockin' and rollin', hot-wheeling around, turning on a dime, backing up, maneuvering corners.  You get it. The kid knows how it works and uses it everyday to walk into and out of school.  On grass, pine bark, whatever; his own gold-plated ATV.  Like I said, he's mastered it.  

Big test...a public place.  An errand.  We chose Office Depot for its small customer size, wide aisles and because we only had one or two things to get.  Quick trip.  Chris takes Ace off to get aforementioned items while I cruise the aisles with Louie.  Doing well.  A little distracted by the automatic opening and closing doors.  Moving on.  He stops and looks at highlighters.  Further down, he is drawn to some shiny display of leather planners.  Then, for whatever reason, he decides he done walking.  Drops to his knees and starts the "eeeeeeeeeeee" cry.  You can't see it in the above photo, but there is a belt and so he was strapped in and couldn't get out.  He could only, as he did, fall to his knees and cry in protest.

Okay, this is where you may not understand what I did.  Much we do as parents, special needs or not, disciplining, teaching, etc., can be done in a vastly different number of ways.  A method that works well with children with autism and a method we practice often is based on some of the principles of ABA, or behavioral therapy.  Ignore the undesired actions; praise the desired actions.  So, I walk away.  I can still see him obviously but I pretend to be looking at file folders. I had to win this one.  If I let him out of his walker and carried him, it was he who took the gold (sorry, the Olympics having just been on and all).  

We have to stop just to laugh.  I can do this now.  Now that it's over.  Okay, so one thing we didn't consider was that this was the before school tax-free weekend.  Everywhere that sold stuff was busy.  Even Office Depot.  Can you imagine what people are thinking when they see this whole scenario?  This poor child strapped in a walker, on his knees, crying and pleading wit his eyes to unleash him from the metal torture device.  And here, I, the mother, have walked away?  

Chris told the story to someone the other day and noticed a part of the story that I'd already repressed.  How I loudly announced to everyone checking out that Louie was perfectly capable of walking in his walker and this was his first outing to a store and I had to win this battle.  But, you should know, that as I was saying this, I was WALKING out with Louie, still crying, but nevertheless, walking in his walker.  We have since been to a number of other stores and restaurants and he has been walking in his walker, independently and almost, maybe, with a sense of pride?  

Whoever "they" are, again, I quote another nameless author, they say that life is the toughest teacher for it makes us take the test first and then teaches us the lesson.  I can buy that for now. I can wait for my lessons.  I just hope I'm not graded too harshly on the tests.  

Thursday, August 21, 2008

Vowels and Consonants

My mom left today after a four day visit and emailed when she returned home. She commented "Louie makes my heart hurt if that makes sense. It's the only way to describe him right now." I understand exactly what she meant. It's the same way I'm feeling right now. My heart just hurts for him. For me. For his grandparents.

You know, the funny thing about Williams syndrome, which really isn't funny at all. Why do we use such stupid language sometimes? Anyway, the not so funny thing about Williams Syndrome is that I'd never heard of it. Ever. So, when Louie was diagnosed, I could make it whatever I wanted it to be. Oh, here on the Internet, it says mild to moderate retardation, so of course I deemed that Louie would be the "mild" case. Many kids with Williams Syndrome are musically gifted. I envisioned Louie playing with the Philharmonic or touring the world singing in 100 different languages. I read children with WS were extremely extroverted, conversational and friendly and loved people. I imagined Louie making friends at every corner; the adored child.

Okay, so it's not turning out that way so far. I know, I know, there's still time. But he doesn't fit the Williams syndrome profile. One of his doctors labeled him as "low-functioning". He is not friendly. He's not showing any musical talent. He doesn't speak a single word or even attempt words. He babbles, 'a' and 'e' and even that is rare. Who would have ever thought vowels and consonants would mean so much to me? His speech therapist sent home a note this week saying she heard the sound "muh." Do I celebrate? Yes, I suppose I do.

Louie has a dual diagnosis. He has both Williams syndrome and autism. Point here is not poor me, as much as I realize it may sound. The point is that every moment, I'm learning more about what it means to be the mother of Louie. And who he really is. And it doesn't matter how many labels we put on him and how much I read about these labels. He'll still be Louie. But a Louie that tugs a little harder on my metaphorical, yet vulnerable heart.

I create all these expectations about what he should be like, according to the things I read, the doctors I talk to, the WS website. And then I find myself left with that feeling similar to the day of the diagnosis - not the "oh this could be anything I want it to be" part, but the wave of nauseous realization that this is what's happening. The reality part. Since Williams syndrome is rare, I wonder if my grieving process is taking longer? Since I had nothing to go by, nothing to compare it to? No knowledge of what I was facing and all the knowledge I have gathered has turned out not to apply to Louie.

I will continue to learn more about who he is and what he needs and stop reading about what he "should be". I will learn more about how he is not words on a page; he is the person sitting on the floor stimming out on a Crawl Ball - cause and effect toy. His current obsession. Cause and effect.

These are tough times with Louie. And as Ace reaches every milestone it's such bitter sweetness; or maybe it's a full-blown-elbow-jab in the ribs. Wow, this is the way a human develops. This is absolutely amazing. Chris and I watch in amazement, saying "Louie is just now doing that" or "Do you remember how long it took Louie to figure out the ball tower?" Ace has now surpassed Louie. We knew it would happen. Ace is beginning to walk and talk. Words! Real words! I need to call Mensa International right away.

So, Williams Syndrome isn't everything I thought it was going to be. Is anything? Hasn't everyone been disappointed by imagining something in the future and it turns out to be nothing like what you thought it was going to be? I'll answer for you. Yes. But haven't there also been those moments, those that you least expected that were amazing? The ones that aren't planned, the wet kisses from my boys, the full moon rising on the horizon, a brief but meaningful moment with a friend, sometimes just to let them know, "Yes, I'm still alive and I still love you." Camping on the beach cause you were too young to a.) afford a hotel, b.) think about and become frighted regarding the safety, c.) sitting on a lifeguard stand late at night, feeling the salty wind, watching the waves and the black water that went on forever and ever. d
We all struggle with the disappointments, unwelcome surprises and hurtful situations in life. We should own our pain and not feel guilty about it. Rachelle, breast-cancer survivor from my book club, said it perfectly the other day. "It's like if your whole hand gets slammed in the car door, it hurts. If your pinky gets slammed in the car door, it hurts." Doesn't matter what your hurt is or the cause. It still hurts. And that's okay. We are the ones who live with that hurt no matter how big or small we think it is. It's ours and we feel it and that's really all that matters. You have to feel it to get beyond it. But we can't lose ourselves so much in our pain that we miss out on those deliciously, hilarious moments that make you laugh until your side hurts or the appreciation of a sleeping baby; a sight that takes my breath away every time I see it. Sometimes we do, though, have to lift the covers in order to see these thing too. You know, go ahead and get out of bed.

Friday, August 1, 2008

My Dear Friends, I Thank You.

Hello Dear Blogger Friends, 

I don't believe I have told you lately, or ever, actually, how much I love reading your comments. And all your funny stories that make me laugh so hard.  And all the support I get from all of you.  I wish I weren't writing this mass thank-you but it's the only way to reach many of you. I just want to take a moment to acknowledge you and voice my appreciation for your friendship and support. Soon, I will be back to keeping up with your blogs as well.  As you know, it's been a crazy, crazy July.  To July, I bid you adieu and will see you again next year.  

I know, you can't hear any more about me moving.  I can't talk about it any more either.  I just keep hoping for some "ahhh...everything is done and unpacked and hung up and filed" moment. Okay, here I am talking about it.

Let's discuss something much more interesting.  I bought a waterpik over 3 months ago.  My dentist said it was imperative that I use it everyday with this specific solution I mix at home to try managing some kind of gum gap thing that's going on.  I haven't done it.  Nope, not once.  But it hangs over my head.  Every single day.  "I should waterpik, I should waterpik, I should waterpik."  It's become my mantra.  And every day I see that stupid 2 liter ginger ale bottle sitting empty, thrown carelessly to the bottom of the bathroom cabinet. The one I bought specifically for mixing my special waterpik solution.  It just lies there like trash, saying "You should waterpik, you should waterpik, come on, just mix the solution at the very least."  The only time I even touched the dumb gadget I ended up breaking the glass pik part and had to super glue it back together. Wow, it was good to get that out.  I'll keep you posted.  I know you will all check my blog many times throughout the day to see if I've updated regarding this matter.  

Anyway, I just want to hug you all, near and far, friends I've known forever, friends that live close and far, friends that I've never even met in person. Blogging has been so good for me. Obviously it's my therapy.  Clearly, I should probably invest in some real therapy some day.  But for now, this is working and much of it is because of all of you.  Thanks, guys.