Monday, November 29, 2010

The Thanksgiving "Mumpkin"

Thanksgiving is my favorite holiday.  I'd like to say this is because I'm so thankful for everything, but it's really because of the food.  I mean, at what other time during the year can one pig out like that and not be considered a total glutton?

Christmas is my second favorite, but only because I love watching my kids squeal in delight.  They don't do that on Thanksgiving.  They start to get excited when I tell them everyone's coming over for dinner, but when they ask, "What will we be doing when they get here?!" somehow, "Eating TURKEY!!" just doesn't produce the same effect as "Opening your CHRISTMAS PRESENTS!!"  It's kind of funny watching them try to figure out my enthusiasm.

I want everything to be perfect for Thanksgiving at my house.  I always have.  It was always perfect at my grandmother's house when I was growing up, and it's only right that I should carry on the tradition.  My dream has always been to have a comfortable, family home for holiday dinners.  A quiet reprieve for my family from the grind of daily life.  A place of warmth where everyone can celebrate beauty, abundance, and togetherness - where we can laugh and remember what life is really about and why we live it.  I've always wanted it to be a beautiful place on Thanksgiving, perfect for reflecting on the passage of the year and for celebrating fresh hopes, new dreams, and all the anticipation of a new holiday season. 

I pour all of my energy into creating an environment like this for Thanksgiving.  In addition to the cooking, I always try to do some sort of creative decorating project.  "I am an artist after all," I always think, "There should be something beautiful to look at around here."  And I tend to focus on the table because that, after all, is where the food will be.

There are times when I'd really like to wiggle my nose and turn into Martha Stewart.  However, I always end up as some semblance of Roseanne Barr on Meth instead.  This is because when things begin to look like they're not going to go my way, I attempt to force them into submission.

This year I found a wonderful table centerpiece in a magazine.  It was called a "Mumpkin" and was basically a pumpkin that was covered in flowers.  It looked adorable in the picture and seemed easy enough to do, so I bought pumpkins and mums and followed the directions.  It said to take a nail and a hammer and gently poke holes into the pumpkin all over.  Then it said to stick the mums into all the little holes and the end result would be a perfect, pumpkin shaped, flower covered centerpiece.

At first I set the pumpkin neatly onto a piece of newspaper on the kitchen table and began trying to tap the nail into it.  It was a very hard pumpkin though.  Pretty soon I had the pumpkin in between my knees, trying hard to pound the nail holes "gently" into it.  After about twenty minutes I had succeeded in creating two holes and had sore hands because I kept hitting my fingers with the hammer every time the nail would finally slide off to one side.  I was becoming quite impatient by this point.  "God," I thought, "This is going to take all night!  And I don't have ALL NIGHT to make a freakin' centerpiece!"  So I asked Shane for his drill.

Upon hearing the request for the drill, Shane stopped and looked at what I was doing for a moment.  I could tell that a thought entered his mind, wrestled with whether or not it should find words, and then, defeated, gently slid away.  Reluctantly, but without saying a word, he went into the garage and produced a drill.

I held that pumpkin down, fired up that drill, and went at it as though this had become a personal matter. It went well at first.  The drill bit dug successfully through the hard, outer layer and finally sunk deep into the pumpkin.  But then, as I pulled the bit back out again, it pulled long strings of pumpkin guts out with it.  I really wanted my idea to work so I kept drilling the holes anyway, but before long it looked like the pumpkin had actually exploded in the kitchen.  I had little pumpkin flesh dots and strings of guts all over the table, the walls, the floor, and me.  There were strings stuck to my pants, covering my shirt, dripping off of my face, and the pumpkin looked like a disheveled head with long orange hair.

I did my best to stuff the gut strings back inside all of the little holes, and the flowers did end up covering up most of the pumpkin's indecency, but the whole process took me over an hour and half to complete.  And the pumpkin, which turned out to be quite lopsided, kept falling onto it's side on the table.  It's little green stem wasn't poking through the flowers out the top like it was supposed to be.  It was poking out the front.  Shane kept giggling at it when he walked by. 

We bought all new dishes for Thanksgiving this year.  Cale recently went through an obsession with the sound of shattering glass and broke nearly all of my dishes one by one.  He would wait until I was busy and then push a chair over to the counter.  He'd climb onto the counter top and open the cupboard, grab a dish, stand up holding the dish over his head as high as he could reach, and then drop it onto the kitchen floor.  He'd absolutely squeal in delight over the sounds of the shattering glass.  I would generally be upstairs doing something and hear the chair scooting across the kitchen floor.  Then I'd run to the kitchen as fast as I could, catch the very end of his display, and then catch him mid-air as he dove off the counter towards the glass on the floor.  Oh how that scared me.

The only glass things that survived were the couple of remaining pieces from an old set of nesting bowls that were a wedding gift from the dad of one of my oldest friends.  He didn't get them because I hid them.  The only actual dishes that survived were a few plastic kid plates and an old Corning ware set that was a hand me down from my Mom.  This I didn't hide.  It's an incredible set really.  Not only is it inexplicably ugly, but each piece has managed to bounce repeatedly off of granite without even the slightest chip.

When Thanksgiving day arrived, we were faced the question of how to set the table with all the new dishes with Cale around.  He climbs onto tables quickly and easily, and we feared that the temptation would be too great for him if we simply left breakable dishes out at his disposal.  And since I'm a Martha Stewart wanna-be, paper plates would not have sufficed for Thanksgiving dinner.

We knew we'd be busy cooking and wouldn't be able to keep an eye on the table all day, and we knew that once Cale discovered the dishes on the table it would mean grabbing him off the table top and putting him back onto the floor six hundred and fifty thousand times during the course of the afternoon, so we thought hard and came up with a brilliant plan.

We decided that all the new dishes would stay on top of the refrigerator until Cale went down for his nap.  Then we'd set the table and not get him up from his nap until we all sat down to eat.  Now, Cale doesn't actually sleep at nap time anymore but sometimes we pretend he does so that we can get things done.  He plays well in his room by himself and this is often a comfort to him.  However, as we found out, if he stays in there too long, he's very energetic when he comes out.

We locked him in his room at nap time (judge if you want, I don't mind) and there he stayed quietly for about an hour and a half.  Then, as soon as we were all sitting down to dinner, Shane's mom got Cale up, changed his diaper, and then put him in his booster chair at the table to join us.  I thought for sure this was a fool proof plan.

Well, shockingly, the last thing extreme ADHD boy wanted to do after being in his room for so long was to sit down at the table.  So he unbuckled himself, got out of his booster chair, and ran away.  I went and got him and put him back in his chair again, showing him his food.  But he immediately unbuckled himself, got out of his chair, and ran away again.

"Did you give him coffee today?" Shane asked me in a whisper.

"Three teaspoons," I whispered back, "but coffee quickly loses it's effectiveness and you have to drink more and more to get the same effect.  That's why they don't use it for ADHD on a permanent basis."

"Did you call the psychiatrist yesterday?" he asked.

"Yes, but she's out until Monday," I answered.

"Oh," he continued, "We shouldn't have left him in his room all that time.  Now the last thing he'll want to do is sit still."

"Well," I answered, "it was either that or a pile of broken dishes.  It's hopeless to try to figure out the right answer ahead of time isn't it?  Oh, I thought for sure this would work!"

I tried one more time, for good measure, to put him back in his chair at the table with us but he simply unbuckled himself again, got out of his chair again, and ran away again.  That time we let him go.

I figured that with everyone eating off the dishes there wouldn't be much danger of crazy boy shattering anything so we decided to let him go ahead and run around.  I really didn't want to chance him ruining the dinner that I'd worked so hard to make perfect.  I didn't want to give him any reason, what-so-ever, to start screaming.  Because when Cale starts screaming, he's not always able to stop.  Sometimes he'll cry for an hour straight before he finally calms or falls asleep.

One of his therapists recently explained to me that kids with Autism struggle a great deal with self-regulation.  What that means is that once they get worked up, they aren't always able to calm down.  A friend of mine from the support group has an Autistic son who sometimes screams for five hours straight before he finally calms down or falls asleep.  It happens.  But I didn't want it happening while our family was trying to enjoy our perfect Thanksgiving dinner.

Well, of course, it didn't take two minutes before he got pissed off about something in the family room and started screaming.  We brought him to the table again, offered him food, offered him toys, hugs, markers, suckers, all of his favorite things in a desperate attempt to sooth him, anything to quiet him just long enough for the family to enjoy dinner.  But he didn't quiet.  He kept screaming and screaming in spite of our efforts, so I finally locked him in his room again where his screaming wouldn't be quite so loud for all of us.  Then he continued to scream and slam himself into the walls while the rest of us ate turkey and pretended to be a civilized family.

"So," I asked my dad in between bites of stuffing, "how were the roads on the way down?"

AAAAAaaaHAHAHAHAHAhAHAAAAAAAAAAAAAAAHHHHHHHAAAAaaaaaaa!!!!  Slam, Slam, SLAM!!  aaaaahhhhhhahhhhahhhhha!!!!!  SLAAM!

"Uuh well, you know, they were uuh pretty bad for the first hundred miles or so but then they lightened up," he answered, his eyes trailing up the stairs.

SLAM, slam, AAAAAAAUUUUUUUUHHHHHAAAAAAAaaaaaaaaahhhhhhaaaaAAAAa!!!!!!!!!

"Mom didn't make it to Grandma's because of the roads," I continued, "I guess they're bad all over Montana."

AAAAAAAAAAAAAAAAAaaaaaaaaaaaHHHHaaaaHHHHHHHaaaaaaaaaaaaaHHHHHaaaaaa!!!

"Uhh, yea, they're bad all over up north," he replied.

AAAAAAAAhhaaaaaaahhhhhhhhhhaaaaaaaaaaaaaahaaaaaaaaaaa!!  Slam, SLAMMM!!!!!

"How long do you plan to stay in Arizona Jack?" Shane's Mom asked my dad.

AAAAAAHHAAHHAA SLam SLAM!!! aaaaaaahahaAAAHHHHHHAAAAAAAAAAAAA!!!!

"Oh, huh, probably through New Years," he answered.

aaaaaaaaaaAAAAAAHHHHHAAAAHAHAhAhhhhhhhhaaaaaaaaaaaaaaaaaaaaaaa!!!!!!!

"This turkey is so moist Shane," she said, a piece of meat dripping off her fork.

"We bought a Butterball and Shane brined it last night," I butted in, "It is good isn't it?"

AAAaaaaaaaaaaaaaaahhhhhhhhhhaaaaahaaaaaa!!!  Slam.  SlaaammMM.  SLAAAAAMMMMM!

"It's very good Shane, really tender," everyone complimented enthusiastically.

On the outside I continued to make chit chat about snow, white meat versus dark meat, and pumpkin soup.  But on the inside I was fuuuuuming.  It dawned on me as I sat there that a year ago, on Thanksgiving day, I didn't even know yet that anything was wrong with Cale.  He sat quietly at the table with us and ate turkey, green beans, mashed potatoes and pumpkin pie.  Now he only eats cereal if he eats anything at all.  He has regressed in so many ways since a year ago, and his progression looks like one step forward, two steps back, three steps forward, one step back, etc.  He is moving forward (at least I think he is), but it's untidy and unpredictable at best.

I felt angry.  In fact, I found myself wishing that I could drill holes into God's head.

"Why did you give me a child that ruins Thanksgiving?" I said to God under my breath, "It's not enough that our whole world has to revolve around him the rest of the year?  You can't give us ONE meal in peace?  We're supposed to be enjoying a quiet reprieve.  We're supposed to be reflecting on the passage of the year and celebrating beauty, togetherness, fresh hopes, and new dreams.  How are we supposed to do that with all this damn screaming?  My parents are going to have a terrible experience at my house!  How could you do this?!  And how many Thanksgivings will he ruin anyway?  How long is he going to be like this?  Oh that's right.  FOREVER.  He's going to be like this FOREVER!!!"

I had just about started to cry, right there at the table, when I looked down at the "Mumpkin" I had worked so hard to create.  It was pointing it's little green phallic symbol right at me.

I think I might've actually giggled out loud.  I mean, really?  How seriously did I have to take myself, and my "perfect" Thanksgiving, anyway?

I looked over at Alden and Isabel and they were eating their dinner, playing with their food, and competing for their grandparents' attention like nothing out of the ordinary was happening.  I looked over at Shane and he was still talking about soaking the turkey the night before.  And I realized that my beautiful family had learned to enjoy themselves in spite of the elephant in the room (the thing we all weren't talking about).  So I probably should to.  

Our poor parents, who aren't quite as used to Cale as we are, at first kept looking up the stairs like an eagle might burst through the bedroom door and take flight in the living room.  But even they, rather quickly, began laughing and enjoying themselves.  And it dawned on me that it will probably always be a must, at my house, to carry on and enjoy whether our little elephant is happy or not.  It also dawned on me that Thanksgiving dinners are going to be different around here than I'd always before dreamed, but that doesn't mean they aren't going to be perfect.  

As I sat there reflecting on just how much laughing and enjoying are a matter of choice no matter what is going on around me, Cale began to quiet.  And I realized once again that I need to be consistent in my feelings and actions even if, and probably most especially when, my child can't be consistent in his.  Change the things I can change, and accept the things I can't.

Do I wish he could've joined us for dinner?  Oh...you'll never know how badly.  It does something unspeakable to me when I can't comfort my son, and the idea that he might spend holidays alone because he cannot behave appropriately terrifies me to death.  But I have to trust that God knows what he's doing with Cale.  And I have to trust that he knows what he's doing with me, even if it's as silly as pointing green stems in my direction.  Anything to get me to laugh at myself and lighten the hell up.

Tuesday, November 16, 2010

Coffee

I love coffee.  And I love Barnes and Noble.  The little green chair near the magazines is one of my favorite places to sit and drink thick milk laced with espresso while reading home magazines about contemporary houses on hills far, far away from suburbia.  I devour artful design like shortbread cookies at Christmas time.

I like to put my own houses together in my head.  They're usually sided with wood and thick, drippy, rust colored metal (not one inch of stucco) and have floor to ceiling windows that look out onto some sort of courtyard swimming pool surrounded by leafy green trees.  I've designed houses in my head for many years now, but for the past eight months or so these houses have included accommodations for my future adult children who will most likely be living with us for the rest of their lives.  The trees over the pool are for Cale.

Shane and I pulled up to Barnes and Noble today, walked through the parking lot full of loud, chatty people, and went into the bookstore.  It always amazes me that these bookstores are the same everywhere - almost as identical inside of Cracker Barrels but not quite.  Upon entering, I have a sense of place, that I'm at Barnes and Noble, but at the exact same time lose the sense of where I'm at in the world.  I often forget which city I'm in inside of a Barnes and Noble, and walk out again later to get slammed with a twisted sense of time and direction.  "Is that 24th Street or Bell Road?" or "What month is it?"

Sometimes if I'm alone and not paying attention, I accidentally walk to the wrong side of the building (to where the car would be parked in Billings instead of Phoenix) before I notice.  And sometimes, even when I am paying attention, I still can't get an immediate sense for the street.  That's when I use the weather to tell me where I am - walking into a dry freezer is Billings.  Walking into a dry, hot oven is Phoenix.

As I attempted to make my way through to the magazine section today, I was stopped by a table that sat right in the middle of my path.  On this table was an ivory colored sign with green writing that said Inspirational Stories.  I stared down at the books on that table for a long time.  All the usuals were there - Eat Pray Love, Cherries in Winter, The Boy Who Harnessed the Wind, and I found myself thinking about how sweet these titles were all bunched together like that.  It got me thinking about the title of my own book which I'm currently writing.  I'm nowhere near choosing a name for it yet, but lately I've been considering the title F U U U C K.  What do you think?  No?  You don't think it would end up on that table?

The psychiatrist diagnosed Cale with Extreme ADHD in addition to the Autism about a month ago.  But at the time, the ADHD was the least of our worries since Cale was still banging his head on the ground.  Still, she said she wanted to put him on something for the ADHD and we consented whole-heartedly ("whatever helps" were our exact words).  First, however, she needed a blood sample so she could make sure everything was functioning properly before she introduced medication.  So we made an appointment to see her again a month later and I took Cale into the blood lab the next day to have his blood drawn.  Then we waited.

While we waited, I started Cale on cod liver oil because I read an article about how Autistic children tend to have serious deficiencies in vitamin A.  Cod liver oil, being the only food that contains high enough quantities of natural vitamin A to replenish such deficiencies, was what was recommended.  Therefore that's what I put him on.  Shortly after that SARRC called and said they had an opening (finally) to start ABA based behavior therapy with Cale.  And thank God.  It had gotten to the point where Cale was hurting himself and others, all day every single day.

Over the next three weeks the symptoms of the Autism were reduced somewhat by the ABA therapy and the oil.  The constant tantruming was reduced a ton and he even started saying a few words again.  However, at the exact same time, the symptoms of the ADHD seemed to absolutely skyrocket.  Maybe he'd always been overly active and I just hadn't realized it with so much other stuff going wrong.  I don't know.  But by the time the appointment with the psychiatrist came around again, I was desperate for her to relieve the ADHD symptoms.  I'm honestly not sure which is worse - a screaming head banger or a child who's happy as a clam but climbs the refrigerator six hundred times during the course of preparing dinner.

When we finally went in for the appointment, we waited for approximately two minutes before Cale started pulling the cushions off all the chairs in the waiting room, opening and slamming the door between the receptionist's desk and the waiting room, opening and slamming, opening and slamming, opening and slamming, turning the lights on and off, on and off, on and off, on and off, on and off, while the receptionists (who had no idea what they were up against) made futile attempts to stop him with, "No no sweetie, go play in the waiting room."  He completely ignored them.  It honestly makes no sense to my child why you would acknowledge it, in any way what-so-ever, when someone is talking to you.

After the second time he tried to escape out the What? Are we stupid in our clinic for children with a front door that easily pushes right open onto the parking lot? front door, I finally looked at the reception and said, "Look.  I realize that we haven't been waiting long, but we have a very narrow window of opportunity here before he starts actually breaking things.  And to be perfectly honest with you, I'm too tired to stop him."

"Oh," she said, "Well let me put you into a conference room to wait.  There's nothing he can hurt in there and he can't escape.  How would that be?"

"Thank you," I said gratefully.  And we were locked in a conference room where Cale turned the light on and off, on and off, on and off, on and off, on and off, as fast as his little hands could flip that switch during the entire time we waited.

I had a blinding headache by the time we finally saw the psychiatrist and I told her immediately that we were ready to have him medicated for the ADHD.  She told me, however, that she was very sorry but that Cale's blood work had not come back normal.

I sat there with my mouth hanging open and stared at her.  That's the moment the potential title for my new book landed softly in my head.

Cale has to see four different specialists next week, all of whom have waiting rooms just waiting to be destroyed.  Some of them are several hour long visits (I hope for their sake they have conference rooms).  And the fact that we got him in to four different specialists in a week's time (incredibly fast here in Phoenix) has me wondering exactly how worried I should be.

His blood sugar is low, some sort of other blood levels are high, and his cholesterol is high.  Very high.  High for an adult high (he's four).  He has to see a pediatric cardiologist at the Pediatric Cardiology Institute at the Phoenix Children's Hospital (a place that has a year long waiting list for everything else I've ever tried to use them for).

The psychiatrist asked me if I'd ever heard of the gluten/casein free diet and told me that it is strongly recommended (at least worth a try) for autistic children.  I told her that I've had him on that diet for over a year now already.  Then I told her that I had just put him on Cod liver oil and that he's always eaten a lot of bacon, but she told me that the high cholesterol couldn't possibly be due to his diet especially since he's already gluten/casein free.  She said he'd have to be drinking cupfuls of lard every day to get it that high through diet.  So the fact that it's high, and that it's not due to his diet, means that something is going wrong.  And no, of course, they couldn't give me any clues as to what that might be but they did let me know that they won't be starting any ADHD medication until they fix whatever it is.

The following afternoon, after Cale's Habilitation therapist and I had chased him around the house for three straight hours (literally) trying everything we could think of to engage him in play, I got desperate.  He would not stay in one spot in a room and play for more than three seconds at a time, nor would he stay in one room for more than twenty seconds before he'd run into another room.  His behavior was absolutely wild, punctuated with moments of uncontrollable screaming, and flipping back and forth from crying to laughter to crying to laughter.  He was running and running and running, and breaking everything he was strong enough to break. 

We even tried putting him in the tub and giving him a cup to pour water with.  This ALWAYS calms him down.  He poured the water for about five seconds, laughing, and then for no reason what-so-ever screamed, threw the cups, and got out of the tub soaking wet and naked and ran away again.  This threatened me a great deal because the bathtub and a cup is my only fool proof trick to calm my son when nothing else will work.  And it didn't work at all.

Like I said, I got desperate.  Really, really desperate.  I knew his occupational therapist was coming next to do a therapy session and the idea of chasing Cale around the house for yet another hour with yet another therapist was just too damn much.  I really wanted it to be a successful therapy session.  Plus I was worn out and my feet were killing me.  So I gave him three teaspoons of my dearest friend, cold coffee.

What happened next was nothing short of an absolute miracle.  It took about twenty minutes for the coffee kick in, but then the transformation was swift and complete.  He calmed.  His movements slowed waaaay down.  About then the O.T. showed up and Cale proceeded to stand in one place at the coffee table and put puzzles together with him for the next forty five minutes straight.

I sat in the chair, exhausted, and watched with a mixture of pure awe and a terrible sense of guilt.  The O.T. was sitting on the floor at the coffee table watching Cale carefully and he finally said to me, "I've never seen him put puzzles together before."

I was slouched in the chair with my hand covering my mouth lest my anxiety escaped.  And I actually startled when he spoke to me.  I looked at him wide eyed, with as straight a face as I could muster.

He kept watching Cale with that confused crinkle between his eyes.  Then he continued, "I didn't know he could put puzzles together.  I've seen him rip them apart and throw the pieces at people lots of times, but I've never actually seen him put them together."

Cale looked at him and quietly clicked another piece into place.

"Huh..." the O.T. continued, watching Cale very suspiciously.

"Okay OKAY!!" I finally confessed, "I got desperate!  I wouldn't have done it but he's driving me crazy!  We chased him around the house for THREE HOURS before you came!  And...and...well...I gave him three teaspoons of coffee twenty minutes before you got here."

The O.T. immediately looked at Cale with big eyes.  And Cale looked back at him, right in the eyes, just before he clicked another piece into place.  Then, very slowly, a smile spread over the O.T.'s face.

"He could just be tired," I said, "He did run circles for three hours straight."

"He doesn't look tired to me," the O.T. said, "He's making small, controlled movements with his hands.  He's holding still, listening, making eye contact, and focusing on his activity, none of which he'd be able to do this well if he was tired."

I haven't had the guts, with all that is going on with Cale medically, to give him coffee every day.  I did, however, give it to him before ABA therapy yesterday during which he didn't cry one time.  He also said about fifteen new words.  Let me say it again in case you missed that - FIFTEEN NEW WORDS!!!

I can finally see all these giant puzzle pieces in Cale's life - treatment for the Autism (which for Cale is a gluten/casein free diet, ABA therapy, other therapies, and cod-liver oil).  And these treatments, now that they're all happening simultaneously, seem to be causing all these sudden connections in Cale's brain that he doesn't yet know what to do with.  But his therapists and I can help him with that.

Then there will be treatment for his medical problems.  And now there's a potential solution for the ADHD too, although I'd rather have the psychiatrist medicate him instead of me.  She will though.  Eventually.  Especially after I tell her I'll be doing it myself with espresso until she gives him something more appropriate.  All these things that have previously looked like one and only, impenetrable parts of dealing with Cale that we'd have to learn to live with, are now starting to look like puzzle pieces that will hopefully all come together soon to help him make some real progress.

I don't actually allow myself to expect Cale to ever be different than he is right at this moment.  I fully expect a non-verbal forty year old floating on his back in the courtyard pool, staring at the leaves in the trees above him.  But I do need to be able to look out that window while I drink my coffee and watch him and know that I did absolutely everything I could to help him be his best him, for whatever that turns out to be.  And you know why?  Because getting him to be a certain way is not what this is all about.  He's perfect already.  Getting me to be the best me is what this is all about.  And that means I really can't call my book FUUUCK.  Damn it.