April 29, 2010 @ 06:57

Let me explain… no, there is too much, lemme sum up.  This past week’s stats: 

1. Number of lawn mowers purchased: 3
2. Number of lawn mowers returned to Walmart: 2
3. Number of loose dogs chased by and chased around my neighborhood:  2
4. Number of small kitchen fires set:  1
5. Number of field trips attended:  1
6. Number of seven year olds at the Museum while we were:  ALL of them 
7. Number of cake requests completely blanked on because I’m so overscheduled I don’t know what month it is:  1
8. Number of trips to the gym:  0
9. Number of pints of ice cream consumed for comforts sake:  3, Oh, hey, there’s why I’m not thin… 
10. Number of loads of laundry done:  I lost count at 14

On Saturday, I went to my local Walmart.  I spoke with a young man in the garden center about a particular lawn mower, he was very nice and helpful.  He answered all my questions and told me that when my shopping was done I could pull up to the garden center to purchase the lawn mower and someone would help me load the purchase.  But before I had finished buying my groceries, the bottom fell out of the sky.  Since there was no way I’d be mowing that day and it would just make all of us end up soaked to the skin to load up a mower into a Honda in that downpour, I decided to come back the next morning.  The woman working in the garden center on Sunday morning was very different than the guy on Saturday.  When I asked if someone could help me load up a lawn mower she told me that it wasn’t that heavy and that I shouldn’t have any trouble with it myself.  She lifted them all the time.  She’d get me a cart. 

Uh, yeah. 

Are you kidding me?  You don’t know me.  I could have just had my spleen removed.  I could be a secret shopper from corporate head quarters.  I could be your boss’ wife.  Instead I went and got my own cart and wrestled it out to my car alone.  That afternoon, Bear and I assembled the few loose parts to the mower, followed the instructions for the oil and gas and then attempted to mow the lawn.  The mower worked for about 45 seconds before the engine made a terrible wracking noise and the engine locked up.  I took apart the push handle, loaded it all back into my car and returned to the store.  I am told that the “lawn mower guy” will not be in until Tuesday, but if I’d like I can exchange it.  In hopes that this was just a fluke I made the exchange for another model of the exact same mower.  I returned home.  We go through every step again.  With the exact same results.  Right down to the mower functioning for approximately 45 seconds and then locking up.  I return to the store.  As I arrive a young man is collecting carts in the parking lot.  I ask if I may have a cart for a large return and he offers to help me load the item.  Imagine my surprise.  My surprise however quickly turns to disgust (not with the helpful kid but with Walmart) when the young man informs me that this is the seventh or eighth time he’s seen someone returning this brand of lawn mower in recent days.  I give up on hoping to make this purchase work and get my money back.  (These were Weed Eater brand mowers, by the way, if you are in the market for one, I’d skip this brand.) So, I go to Lowe’s.  I buy a mower.  I buy a service plan with it, too.  I return home with it and Bear begins to put together the loose parts.  It’s getting closer to dusk so I go into the house to start dinner.  I am just getting ready to pan sear a mess of fish (enough for leftovers, so I’ve got two skillets heating up olive oil to about face of the sun hot) when Bear calls in the back door that he can’t figure out something.  I walk out the back door to see.  Unfortunately, I get so engrossed I don’t realize how long I’ve been away from the stove.  It does occur to me, though, so I send Bear into the house to turn off the burners until I can figure out why the mower’s pull cord won’t pull.  About three seconds later I hear Bear yelling from the house, “FIRE!”  I run in to see a pretty healthy column of flames, about ceiling high rising up from the back burner of the stove, thankfully the front burner pan’s contents have not yet ignited.  There is a heavy layer of smoke in the room.  I make Bear leave the house immediately.  Puppy has been on the back patio during this whole process, so thankfully he missed it all.  I get the fire put out.  Then look around.  That heavy layer of smoke is throughout the entire house.  There are swirling streaks of smokey soot up the side of the cabinet that sits above the vent-a-hood and up the wall beside the stove all the way to the ceiling.  The sink, where I managed to get rid of the fire, (it was probably entirely stupid to carry that flaming pan to the sink and I’m probably lucky to not have been burned) is covered in a layer of soot that looks like black greasy cornmeal.  I felt like an exhausted idiot. 

I get Charlie tucked away in the back bedroom and prop open the front and back doors with every fan I can to clear out the house.  I know that cooking dinner now is a lost cause.  I make sure all is well on the back patio with Bear, take his drive thru dinner order, and Puppy and I head over a few blocks to the nearest fast food.  As I pull up to our drive way, I realize that Bear is standing in the front yard, feet spread wide, arms out like an airplane, facing off two sturdy (I’d guess about 40 pounds each) Bassett Hounds.  They are circling back and forth from the street to our front yard, barking furiously.  I park in our driveway and put Bear in the car with his brother and go across the street to see if they know the dogs.  I learn that the happy hippy love your neighbor community center across the street couldn’t care less about their neighbors as they slam the door in my face and leave me to deal with the loose dogs alone.  The next hour is filled with a combination of chasing and being chased.  Nearly getting hit by a car and nearly seeing the loose dogs get hit more than once.  Sitting on the front steps after the local police department cruisers took over circle the neighborhood with spotlights searching for the escapees with no luck.  Monday I took a vacation day and continued airing out the house, laundered all the comforters and curtains and every scrap of fabric that I could, washed down the walls of the kitchen and dining room, learned to love the Magic Eraser, and got the house back to working order.  Tuesday I played catch up at work.  Wednesday I attended a field trip to the Discovery Museum with Puppy and about 120 other first graders.  And today?  I just want a nap . . .  Maybe I’ll get one on Saturday. 
 

April 21, 2010 @ 17:25

Last night I attended a Community Cinema event.  These are great local events sponsored by local PBS stations and Independent Lens.  I highly recommend them if you have them in your community, you can find out more at Independent Lens.  The documentary shown last night was “The Horse Boy”.  It’s about the Autistic son of a couple from Texas and the family’s journey to Mongolia.  It is spiritual, and heart warming, and a complete departure from what most American parents would ever experience.  The family has a ranch with horses and discovered that their son’s more unsettling symptoms were diminished with contact with the horses.  So they began a journey of searching for ways to reach inside their boy which eventually led them to shamans in Mongolia.  The film will be airing on PBS in the coming month.  Check your local public television station for airdates. 

I spilled a couple of tears no more than five minutes into the sixty minute film.  I’ll admit I’m an easy cryer, but not for just any reason.  Although vastly different from my own family’s experience, the parallels that were there throughout the story were both surprising and comforting.  The grieving that comes after diagnosis.  (Even though didn’t each of us who got that diagnosis for our child already know?  And I mean know.  Long before the rubber stamp.)  The lingering guilt and fear that wakes you up in the middle of the night.  What did I do wrong?   What am I not doing right?  What am I not doing enough of?  And the quest that you set yourself on to find every scrap of cure you can find.  Until you begin to loathe the word cure.  Because you figure out pretty quickly that there is not a cure because this isn’t that kind of diagnosis.  The word cure doesn’t fit Autism.  You aren’t looking for a cure so much as you are looking for a parenting manual to a child that not even the experts can tell you how to parent.  Not really.  Not wholly.  You need new words.  New tools.  New ways to help your child grow up in a world that’s not built for him.  A way to help your little square peg fit into a round hole. 

And then here on the screen I’m watching this family who has found a way to go halfway around the world on their quest.  They are sitting on horseback overlooking a herd of reindeer and a village that took two days travel on horseback to reach . . . that’s two days more travel after the roads had ended.  A perfect metaphor for the job if raising an Autistic child.  You have to go to where the road ends.  And then keep going.  And this family does.  They go from shaman to shaman for blessings and rituals for healing for their son.  I loved this film.  For it’s gritty, hard worn, exhausted, rained on and muddied, strange and beautiful hope.  In the first two years around Puppy’s diagnosis (the first one looking for the diagnosis and the second one after it, trying to fully understand it) I was bombarded by friends and family and other parents sending me titles and websites and clipping articles for me to read.  I devoured them all.  But so few of them filled me with anything but fear.  But this family’s story was so different.  It helped me to appreciate just how far you really can go.  And reminded me to keep thinking outside of the box.  It was full of experts in the field who spoke of Autistic children in ways that I had rarely heard from the specialists of our local medical community.  In four years of this journey, I probably have not yet reached twenty four cumulative hours of time speaking with doctors.  Days on end spent in clinics, yes.  But with only a brisk closing talk with a doctor at the end of those visits.  This is not a complaint or a judgment of the care we have received, just an observation.  There are not enough of those experts.  And there are so many children to serve.  You can begin to feel helpless and a little lost.  As if you are calling up from the bottom of a well, hoping for someone to find you and lift you up and out of the darkness.  But there is very little darkness in “The Horse Boy”.  And wave upon wave of hope.  Even if you aren’t facing the challenge of raising an atypical child, you should check it out.  

An afterthought . . .  after the film, a panel discussion was held.  During that discussion, it was stated (I do not know, or care for that matter, whether it’s true) that the family had actually been given a substantial advance from a publisher to write a book based on the experience.  Which could lead one to believe that this money made having the experience possible.  A couple of people in the audience voiced disappointment in the film because this was not discussed.   Of how they would have respected the family more if they hadn’t been financially secure enough to run off to another continent to pursue this miracle for their child.  All I could think was how sad we are, that nothing is ever free of our competitive, cut-throat, money-focused American attitudes.  There was actual discussion of how attractive the family was and how the father must just want to be a star.  I find it heartbreaking to think that we are no longer capable of hearing a story without wondering about who got how much for what.  I blame “reality television”.  It has so ruined the American mind.  So far ruined that the fact that this family stumbled across the miracle of finding a way to fund this experience, which in turn became a miracle for their child was lost on some.  When the journey of the child was all the story we needed.  And also the reason why I renewed both my local public radio and television station memberships this morning.  The real reality and the real news.  Go support public media.  It’s one of the few media sources standing between us and the cold black dreadful gaping void of Jersey Shore/Pretty Wild variety ignorance. 

April 16, 2010 @ 07:40

I don’t have any words to preface this.  But please, go read, be prepared to be angry and to cry.  And then go and write letters to our state officials and agencies.  It is important. 

A Life Wasted

April 15, 2010 @ 07:46

In response to the quote challenge  from Sarah . . .  if you are a week late, that’s more than a dollar short, huh? 

“Joy in one’s heart and some laughter on one’s lips is a sign that the person down deep has a pretty good grasp of life.” Hugh Sidey

Puppy has been cheerful of late.  Saying “I love you” unprompted.  Let me tell you, a spur of the moment “I love you” from the boy who can ignore you for five hours straight will make your heart squeeze in your chest with actual physical pain.  This morning as I walked him into class he tugged on my hand and told me that from now on when he got to class he needed a hug AND a kiss.  Every day.  I agreed happily. 

It’s funny how as he matures and some of the quirks of his Autism become more pronounced, but at the same time, some things we had worried about being issues for him have faded away.  Strange things have emerged like the difficulty we have finding pants for him.  His skinny little self, too tall for pants that don’t fall off.  But that also must have the right fasteners because his grasp is soft.  Weak.  Hard to describe, really.  He cannot snap a strong snap, like in denim.  I still brush his teeth for him for the same reason.  His handwriting is practically impossible to read.  It is becoming apparent that this is going to be a regular issue for him.  But he has begun to respond to people outside of his closest family.  His little bubble appears to be expanding to include the outside world.  As we walk down the hall each morning, the teachers we pass say good morning.  Today he replied to three of them.  It seems like such a little thing, but I wanted to Gene Kelly dance all the way back out to the car. 

I keep having these moments where I have to cover my mouth because the joy is spilling out as laughter.  And I don’t want him to think I am laughing at him.  That’s a sore spot.  But I don’t know how to contain it when he’s sitting in the back seat and we are driving around town and playing “Cash Car!”.  Have you seen Cash Cab the game show?  Yeah, he’s even got the inflections in his voice down.  He pauses for dramatic effect before telling you if your answer is correct or not.  “That is correct!  My slide is GREEN!” He totals up the money you’ve won as you go along. 

I know that we still have bad days.  Just yesterday morning, for about two hours, he was inexplicably withdrawn.  Silent from home all the way into class.  His teacher tells me that about an hour later he seemed to just shake it off and was back to normal.  I never did pinpoint what had his focus for those couple of hours.  Likely he will tell me, six months from now.  And I’ll be hard pressed to know what he’s talking about.  A few weeks ago as we were working in the yard he apologized to me for cutting down my little tree.  Remember that . . . yeah, May of 2008.  He was four, just about to turn five.  And a few weeks ago it was buzzing around in his head enough to make him apologize to me.  Out of the blue.  He’s like a little Haley’s comet.  Can you imagine being a scientist making a discovery like that?  It’s how I feel everytime I gain a little insight into his mind.  I feel like eventually I’ll figure out how the orbit works in there.  In in the meantime he’s flying through his own personal universe without me.  But oh, when we do stumble over a moment of discovery?  Yeah, it’s just like that quote.  Just like it. 

 April 07, 2010 @ 06:13

. . .  yeah.  That’s right.  That’s what happens when you love Spongebob and your birthday falls on Easter and your parents are cool.  Sorry for the terrible picture quality.  Taken with my phone.  Half sheet vanilla cake with buttercream for Owen’s second birthday. 

April 01, 2010 @ 17:17

This morning, both Puppy and Charlie went to the dentist.  Charlie, of course is old and a bit fragile and we were expecting him to come home with a few less teeth.  He is officially now down to having only nine of them in his tiny little grey bearded head.  But he is still a spry and feisty little dog.  Puppy (yes, there is a strange sort of confusing irony to this post about my dog and my son who we call Puppy) also ended up needing some fairly substantial work done.  Not just a cleaning.  Turns out he needs a crown and an extraction.  Problem is, he’s not going to be able to handle that.  We know it.  His aversions to noise have been growing over the last year.  His toilet flushing fear is still strong.  And now he has added fire alarms to the list of fears.  At school they have fire drills.  And now whenever we are in any public or commercial building of any kind that has the little wall mounted red boxes with safety lights or the pull levers for sounding the alarm, he crouches down into a quick scurry and covers his ears until the evil red box is out of sight.  We’ve had discussion after discussion about what those fire drills are for.  And how they work.  And how they are not going to go off willy nilly at any minute unless there is a very real danger.  But at this point in time, his intellectual appreciation of their life saving capacity is no match for his memory of the pain that the alarm causes in his little head.  The best description I’ve heard so far, which gave me some real help in being able to understand some of his stressors and problems, was to imagine that you are in a room with a large industrial fan blowing.  Now turn on the television.  And now add the radio.  And now try to have a conversation or complete a task while a large group of people speaking in a foreign language carry on in a circle around you.  This is what it is thought it may be like being inside Puppy’s mind.  All the time.  Imagine the stress you would feel navigating the world under that raging onslaught.  So, the dentist’s drill?  The sound that we all hate, whether sensitive to sound or not?  Yeah.  No. Freakin’. Way.  Thanks, Mom.  The solution is that sometime in the near future we are going to be taking a trip to the hospital and going under general anesthesia so that we can have the work done. 

On the bright side, as a result of this method, Puppy will probably never have any of those awful memories of the drill or the novacain shots or any of the other things that we all hate about the dentist.  I on the other hand am not looking forward to the hospital every time we need anything beyond a cleaning for the next several years . . .  maybe even forever.  So, the next time you dread going to the dentist?  Think of Puppy and try to be grateful that you are capable of white knuckling it through the bad parts of the visit.  Don’t take for granted what amazing coping mechanisms you have.  And be thankful for the amazing ways that your brain works for you every day. 

Also, we are thankful for a great dentist, if you live near us and want a recommendation, email me.  Our office experience was great.  See?