Tuesday, May 31, 2011

It's May 31st Already? Are You Kidding Me???

I can't wrap my brain around it. The matter of Time. Where is it going and why is it moving so fast? I was going to have so much done by June 1st. I was going to have the carpets cleaned, the oil changed, an office set up in the basement, an organized garage, winter clothes packed away, flowers planted, (maybe an herb garden -- who am I kidding?) and be down a solid ten pounds for summer wear. Instead, the closets are stuffed with ski jackets and boots, the loser cruiser is chugging along smelling faintly of burnt oil, I have no office in the basement, the garage is still a scary, dark place, carpets are scary, too, the only flowers I'm growing are of the weed variety and ten pounds lost? HARDLY!

I can blame the spring. It's been lousy. A day of sunshine here and there and then rain, lots of it, constant. My bones ache from the dampness. I can blame it on over scheduling myself. But the truth is there are days when I'm wrapped up in an electric blanket like a burrito watching a marathon session of Top Chef and eating cereal for lunch and petting the dog with my foot.

Partly, I'm in denial that school will let out soon and there will be no respite from taking care of Sean. Long days with lots of questions, the same questions, that can be repeated all day long.

"Who has birthdays in January?"
"Does Verle know Miss Becky?"
"Can you make a lower case F? Now a lower case G."
"How do you spell Easter?"
"How do you spell macaroni and cheese?"
"Why do people sneeze?"
"Talk to me, Mommy."

I am trying to be zen-like, be in the moment and not to over-think it. To try to let go of my irritation and stress and to just be. Easier said than done.

There are no play-dates for Sean. No "run up to the park and see what the kids are doing." He can't navigate in that world. He is just so different from his typical peers and in some small ways he knows it. That's the heartbreaking part. I don't think he wants his best friend to be a slightly exhausted and crabby 41 year old lady with bad posture but that's all he has right now, me. And I am going to try harder to remember that -- when I've spelled Blue Heeler for the fiftieth time or shadowed him in the yard most of the day to make sure he doesn't run after a car -- I am all he has some days.

Two weeks left and then my boys are home. Hopefully in that time I can at least set up an office downstairs and get the oil changed in the car. At the very least, I can plant some flowers -- the idea of something growing and blooming always gives me some hope. And we all need hope.

Thursday, May 19, 2011

Give Me The Tooth, Nothing But The Tooth

I guess I've been in a bit of financial shock lately. So much that the idea of writing has not really come up on my radar. I'm still absorbing the shock of the dentist bill for Sean. A cleaning and sore tooth that ended up totalling $1818.00. I'm not kidding.

First things first. His mouth was sore. It took me a while to figure it out though. He's not the type of child who is going to approach me and say, "Gee Mom, my tooth hurts. I think I have a cavity." Instead, lots of tantrumming, struggling at school and just general unhappiness. Then he asked me to scratch his tooth.

"Your tooth?" I asked.

"Yes." Scratch it." And he took my finger and tried to make it scratch his tooth.

"Why?" I asked pulling my finger away from his little tooth and tight grip.

"It itches," he said plainly.

"Does it itch or hurt?" I asked.

"Both. Itch my tooth Mommy."

My girlfriend Christy told me her son, who has autism, came up to her with a pair of scissors and pointed with the sharp edges to his toothache. This is the last resort usually. We wonder why our children seem to be upset too easily, or wake up too much during the night and it's not until a strange pantomime or request ("itch my tooth") that it finally makes sense. Aha. Your tooth is killing you. I get it.

Now, the discovery is sometimes a maze but the worst part is still to come. The actual dental appointment -- finding a dentist that is willing to work with your child. Many children with autism need to be sedated, even for the littlest event like a cleaning. So naturally we go to a dentist that provides "sleep dentistry" -- if that's not an oxymoron I don't know what is.

We went to Sean's dentist who is really a kind man and his staff is great with Sean. I've done this solo twice before with "itchy teeth" but this time I asked my husband to come with me since I was able to make a Saturday appointment.

Sean is okay at first. The assistant asks if he wants to watch Diary of a Wimpy Kid. My husband asks if they have Wiggles (much more Sean's speed) and unfortunately they don't. They begin with laughing gas, which by no means ever works for Sean or makes him laugh. He constantly pulls at the rubber mask and my husband and I are quite sure he's not even breathing the gas through his nose but rather mouth breathing.

Next it's the sedation. Sean will be "awake" but unaware of what is happening. Even still, we hear his holler and yell from the room. It takes quite some time to relax Sean and when the dentist does the cleaning and x-rays he discovers two teeth that need to come out.

This is when I am shown the bill. $1818 -- includes sedation, two teeth pulled, cleaning and xrays. My mouth runs dry. What choice do I have really. I wonder if I should offer up my liver for payment - -a little rusty from college and my early twenties but probably worth something or maybe a kidney -- I only need one, right? My husband looks like he might throw up when the bill is shown to him. I'm sure he's doing the math and that is like at least three airline tickets to somewhere really warm during the rainy season in Portland.

He staggers over to the mini-fridge and snack baskets and tries his best to eat and drink $1818 worth of fruit soda and granola bars. All in all, he ate maybe $4 worth and there were no free toothbrushes or trial size toothpaste to snag on our way out to make up for the rest.

It is the day before Mother's Day and my husband laughs, "Happy Mother's Day. Do you love it?" Just what I've always wanted -- $1800 worth of decayed teeth, x-rays and a little to-go plastic bag with sparkly strawberry Crest toothpaste and a toothbrush.

I agree and sign the papers and start consoling myself. Hey, at least they take credit cards. Just think what I will do with 1,800 VISA points. That's a little more than a $15 Starbucks gift card. I'm making money on this deal. This is actually a good thing...

After THREE hours, Sean is rolled out to us in a wheel chair. He is slumped over and looks like he's been on a two week bender, his eyes rolling to the back of his head, and his back curved like a comma, his chin nested in his neck.

"You okay, little guy?" My husband asks.

Sean's mouth is filled with gauze and he is as sweet as a lamb. No fight in him, just droopy eyes and lips.

"Sean, are you okay?" I ask, bending down to him and wiping blood from his cheek.

"I'm not Sean, I'm Bertie," he slurs and my husband and I look at each other. Even in this state, he still wants to change his name to Bertie. You've got to be kidding me.

The dentist tells us he will probably sleep most of the day. We snicker thinking fat chance. We wheel Sean to the car and he slumps into the back seat with me. He is like warm play-do and I love how pliable he is in my arms. Often times, I'm hesitant to touch Sean, knowing that it will startle him or upset him but at that moment, he is a blob and I'm enjoying his tenderness.

We take him home, and try to steady him, he staggers and falls into the wall -- this boy who has incredible balance can hardly make it two feet in front of him. He doesn't sleep but lays around asking us to pull out his tooth.

"It is out, Bertie. It's just going to be sore for a little bit."

A week later he finally stops asking us to pull out his tooth. I feel like we are through it, at least for now. All I can do now is wait for my credit card bill and dream about the money I'll make -- my $15 Starbucks card. Coffee, anyone?

Wednesday, May 4, 2011

Postcard to Bertie

I went to a writing retreat last week. One of the speakers handed out index cards and asked us to write a "postcard" to someone we haven't had a chance to have a good chat with. For some reason, like most things in my life, my thoughts went to Sean and how often we have been struggling to make sense to each other. I knew I was probably supposed to write to an old friend or a family member I hadn't seen in some time, but my mind kept going to that red-head who even when he sits next to me can feel like he's a thousand miles away.

The teacher told us to write. We had three minutes:

Dear Sean? Bertie? Blythe?

Who are you today? This morning your hair looked like a tangled plate of spaghetti in red sauce and your eyes yawned open -- bright bluish green like swimming pools and I wish I could've jumped into them.

We had a tough morning, didn't we? Too much tug of war and not enough working together. And, honestly, I was glad to see you off to school. I needed a break. I do love you, little guy. Heart and soul. Be better today. xo Mommy

When the time was up we had an opportunity read aloud what we wrote. Only a couple other people knew that Sean has autism but the rest of the class, probably 16 others had no idea. As I read I heard laughter and people nodding. Yes they had all been there before with their children, grandchildren, friend's children -- wanting to rush the little grouchy rugrats out of the house. A break from the whining. Good riddance.

I hadn't meant to make people laugh, or smile or find it relatable. And I couldn't help thinking what if they knew my child was handicapped -- would my words seem harsh, maybe even cruel. Was I a lesser person for saying it? Would they feel bad laughing if they knew that Sean was autistic?

Gosh, I certainly hope not. If it's anything at all it's honest. Kids are tough. Kids with special needs can be especially draining and it's okay to turn away from the bus or the school drop off line and feel a bit euphoric daydreaming about a cup of hot coffee and reading the paper uninterrupted. When Sean is with me he is with me -- he is right next to me, his little mind racing asking me question after question ("Miss Judy call me Bertie? I was Bertie when I was in your tummy? I was never Sean.")

The teacher asked us to flip the index card over and gave us our second writing prompt. He asked us to write a postcard from the person in response to the one we had just written. Three minutes and go:

Mommy, I am in here. I am sorry that I am having a tough day. My neurological wiring has been off lately and I'm struggling to keep it together. I really need you to be patient with me. I need you to answer the same questions over and over -- it makes me feel safe and connected. I am floating, sometimes in the unfriendliest air, afraid to breathe or shut my eyes -- afraid the world will go black and swallow me. I don't mean to be like this. Most days I just want to show you who I really am. Love, Bertie (NOT SEAN)

Luckily we had the option to read what we wrote and I opted not to. I think it might have been too hard. It's the truth though. It's what keeps me connected to him, to loving him with all heart and soul. Because deep deep down, I know these are words that he wants to say but can't. And he needs me to believe that those words swirl in his heart and mind, and although he has never spoken them outloud, I trust that he speaks them in his dreams and thoughts.