June 28, 2010 @ 07:02

Last night Puppy was standing by the dining room window, softly rocking from left foot to right, talking to himself quietly.  Every now and then he would punctuate a point he was making to himself by lifting on tiny finger towards the ceiling, his fist curled into a gentle “O”.  Then slowly lower his hand back to his side.  Straight arms.  Softly closed fists.  Occasionally I would call out to him from the kitchen or living room.  Ask him a question.  Engage him for the sake of engaging.  He would respond, then turn his head back to the window.  And there he would continue his murmuring speech to himself.  These days he never stops talking.  Talking talking talking.  It is a constant hum in the background of our lives.  Sometimes rushing into the foreground as he becomes excited over something and chooses to share it with me.  It reminds me of the hum of an oscillating fan that’s out of whack.  The drone of the fan as it sits staring to the right is steady, soft, not something of which you are truly aware unless you consciously tune into it.  Then there will be a little tick or pop and the fan will swing your way.  You’ll get a rush of air as it swings by you.  A moment of relief as it lifts your hair from the back of your neck.  And then it makes a soft little thud as it settles into its position staring to the left for awhile.  Do you remember those days when you were a kid, when it was so hot you couldn’t sleep?  That heavy sticky feeling where your arms are made of lead, the sheets were too weighty to stand them lying over your legs and not even the cool side of the pillow can soothe you to sleep.  When all you can do is find that spot, the coolest spot you can, and wait for relief.  That is how I’ve been feeling lately.  Strung out and exhausted, the way you do on a day so hot that the air conditioner cannot keep up.  Not unhappy.  Just exhausted.  Exactly like a night after a long summer day when you were ten. 

Puppy hasn’t been sleeping almost at all lately.  Some nights he is awake until 5 a.m.  I tuck him into bed at eight.  And when I go back at ten to check, he’s still wide eyed.  So I settle him in with me, to keep my eye on him and make sure his wide eyed alertness doesn’t turn into wandering full out.  He lays in the bed beside me talking in whispers to himself.  He is planning.  Some immense new wonder of the world is being crafted inside there.  I wonder what it is that he is constantly building.  If you watch carefully, you can see him stop, reverse, and change a part of his plan.  And no amount of pleading, or redirecting or scolding can pull him out of his plans and force him into sleep.  He will sometimes pull me from my half sleep to ask me cryptic questions.  Like, “Mommy, how much is 123, 455 plus 12.”  Is this some quantity of concrete he will need for his colosseum’s columns?  The number of bricks he will need for a section of his great wall?  Or is he simply stringing together numbers in some endless equation in his mind?  My tiny little Sheldon?  Sometimes I think he is designing some sort of game in his head.  Yesterday afternoon he asked me from the back seat as we drove home, suddenly popping out of his private conversation with himself, “Mommy, which option will you choose:  Story time, Activities, Picture Place, or Taking Care of Me?” 

“I will always choose taking care of you.”  I told him. 

“Mommy, you don’t always have to choose Taking Care of Me.”  He said. 

“But if I don’t take care of you, who will?”  I said. 

“We can have a multi-player function!”  He grinned at his own brilliance with this solution. 

Maybe that’s it.  Maybe inside his mind, he’s building that mythical Village.  A place where it’s safe for a Mommy to sleep while her wunderkind is too busy working out all the great big world’s mysteries to find sleep for himself. 

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 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 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? 

March 01, 2010 @ 13:29

“There’s a sort of greatness to your lateness.” Fi

“Thanks.  It’s not achieved without real suffering.”  Charles, Four Weddings and a Funeral

I completely flaked on my own quote.  But not for lack of things to say.  I’m afraid I was slapped in the face last week by something.  And I let it get me down.  But I’m back up again.  Thanks.  I’ve always been jealous of those people who are not slightened by the idea that “not everyone can like you”.  Those people who walk around all casually secure and firmly seated in their uniqueness and not bothered one bit by what wagging tongues may be saying about them.  Suppose it is somewhat related to what I had to say.  And here it is . . . 

The quote:  “Never put a sock in a toaster.”  Eddie Izzard

Puppy is becoming more and more of his own little man every day.  He mostly seems to be sailing along about two scant years behind his peers in social maturity.  Some days he is a tight little ball of uncontrolled boy.  Sometimes that is happy boy.  Sometimes it is something more like a cornered animal.  Not very often, but it’s there.  But what I am finding is that he is, even when he is out of sorts, happy.  There are things that set him off.  But they are no more frequent than those of a typical child.  He is however, a mystery to those who don’t know him.  What sets him to spinning is not typical. 

Being interrupted, whether it’s while arranging a line of trains or something less fun, like homework.  He just won’t process what you have to say to him until you let him finish the train.  Or his sentence.  Or his drawing.  He’s like a little computer.  If you ask him to run too many programs at once, his processes will be compromised. 

The way loud noises frighten him, even when he knows they are coming, causing him sometimes to double over cringeing, hands cupped over his ears, as if in physical pain. 

The way he will walk into a room and address its occupants as if they were only staged there, like a set in a play, awaiting his entrance for all action to begin. 

And none of these actions are contrived.  No bids for attention.  No manipulation.  No passive aggression.  He is a blank slate in those areas.  He is innocent of those drives.  He is guileless.  He is actually happier with no audience at all.  He will play alone for hours.  Content.  And this is where my mind has trouble adjusting.  Where I am afraid he is lonely, he seems to be complete in himself, with little need for companionship.  Although I am grateful for the way he does seem to love me, Bear, and a handful of our friends and family.  I am coming to understand that love, for him, is very different than others might define it.  Emotionally we are so different.  Where I may be filled with emotion during a hiking trip, over the beauty of it all, he is more likely counting the steps it takes to reach the path’s end.  While I may be excited over the first ripe peaches of the season, he is annoyed to be pulled away from his projects and made to eat.  Where we may be emotional, he is factual.  So we struggle with how to raise him to be healthy and happy when we are still figuring out how he defines his happy.  Healthy, however, we are getting better at. 

I had a friend who used to tell me all the time that there was nothing wrong with him.  In that tone.  You know, that tone that says, “There’s nothing wrong with that boy that a whippin’ wouldn’t fix.  You are just a bad mother.  If he was mine . . .  “  The woman was right.  And also dead wrong.  There IS, in fact, NOTHING WRONG with my boy.  But there is definitely something different.  This is our daily challenge right now.  That we are different.  And that our educational system does not embrace different, not as a general rule . . .  You know how they want all of our kids to be neatly sliced white bread.  But sorry, my kid is a sock . . .  So when all of that is the norm, and we are not.  And all of the classes and schedules and programs are built around making toast, here we are with a sock.  I am so very grateful to the school district we live in.  They have gone above my expectations, and even my hopes, for what public school was going to be like for Puppy.  We have teachers that are engaged.  Who are not put out at being asked to work a sock into all the toast.  We are coming towards the end of our second year.  Another year of social blunders and embarassing stories.  But at the end of the day, maybe they aren’t embarassing.  Because why would a sock feel judged in all his socky glory about not being good at becoming toast? 

February 10, 2010 @ 20:12 

“Experience teaches us that silence terrifies people the most.” ~ Bob Dylan

In response to Kat and the quote challenge . . . 

You’ve probably noticed how I haven’t had too much to say about Puppy’s progress lately.  It isn’t because of setbacks.  We’re not white knuckling it here at our house.  We are in a strange holding pattern.  I feel like a rabbit in the underbrush.  I’m pretty sure there are still wolves out there.  But right now we are cozy and safe.  I don’t wake up in the middle of the night with my heart thumping against my ribs after dreaming of driving a car that is out of control.  Cake and fat nightmares aside.  Cars are my subconcious tell.  I dream of out of control driving when I’m out of control in real life.  Cars, trucks, planes, towering four-story unicycles.  Oh, yeah, really. But not lately.  That is the way things play out for me when I am under real stress.  But for the moment, we are feeling very safe.  And this leaves the concious me feeling as if I should be doing something more.  Next week we’ll be going in for a nutritional study.  We are participating in a genome project as well.  We are due for a check up with our Autism specialist in just a couple of weeks, too.  None of which is giving me pause.  Which . . .  gives me pause.  Isn’t that rich?  We are so completely happy and well right now that . . .  I am scared.  Does that make sense at all?  I complete our trio nicely, Puppy, Bear and Goose. 

I am feeling the way you do when you start a new job.  And you’ve read all the training manuals.  And you feel as if you have a really good handle on what is in store and what to do in all the situations that have been described to you.   But you haven’t been set free on the work just yet.  And you know that the real test will come when you are.  And you are waiting for it.  And feeling a bit useless while you wait.  So you begin to second guess yourself?  Or that feeling you get as you stand in the batters box and watch that first pitch coming at you?  As a pretty non-athletic girl, that’s a moment full of angst. 

Lately, if I am losing sleep it’s because of a sore shoulder or Puppy having a restless night.  Not because of great big worries.  And now that is beginning to turn into a worry.  As if I’ve missed something.  As if I’ve shirked some duty.  Shouldn’t I be doing something more? Enough already with the no problems.  I don’t know what to do with that. 

Perhaps there is a way for me to just enjoy this really good place we are in right now.  Before the kids in his class get older and meaner.  Before the quirks of his behavior begin to stand out.  Make him an outsider.  Perhaps there is a way for me to just appreciate his sweet sweet face every day and not have that twist of pain in my heart and that sting of tears from the fear of what may be just outside our door.  I read somewhere that fears and negative emotions may actually be an evolutionary strength.  But it certainly sucks the joy out, doesn’t it?  I spend a lot of energy trying to anticipate things that could hurt my boys.  Not just Puppy.  Bear, too.  But sometimes I wonder if all my careful arranging of what is in their paths isn’t just futile.  Me setting up dominoes.  That are bound to fall.  When what might serve us all so much better would be for Mommy to be able to be at peace when the rest of our world is. 

November 16, 2009 @ 17:15

On Friday afternoon, Puppy visited his doctor.  First of all, he’s gained two pounds!  Yay for the boy who only eats about fifteen different foods!  And we talked about the troubles he’s been having at school.  The tension, the racing, what is apparently his medicine wearing off a few hours too soon.  After discussing all the options, we decided to go forward with changing the way in which he takes his medicine.  Same actual medicine, just a different delivery method and hopefully it will have a more gradual and long lasting release into his little system.  Less of a valley for him to be slipping into in the morning and less of a ski jump to be flying off of in the afternoons.  The options were a patch or a pill.  As I’ve seen his previous interactions with band aids, we said no to the patch pretty quickly.  It is a little early for it, but swallowing pills is a life skill, that really, everybody has to learn.  So we opted for the pill form.  Saturday and Sunday he didn’t do too well with it.  God love his daddy, but I suspect he wasn’t as hard line with him as I sometimes am.  Or maybe I just have my bluff in better right now.  Because despite his not managing it over the weekend, this morning he did it.  On the second take no less.  The chocolate milk was a good call.  And when he got a little look of surprise on his face after he swallowed it down and then grinned, I thought great!  This is going to be great!  I gave him a little high five and was telling him what a good job he’d done when his little face froze and giant tears welled up in his eyes and began to spill over.  It took me a minute to get him to calm down and tell me what had upset him so suddenly.  As it turns out, the schools anti-drug program had convinced him that pills are bad.  All pills.  Well, yes, frequently pills are bad, but not all the time.  When it dawned on him what he had just done, he was terrified that he was going to die.  He began rubbing and tugging at his little tummy frantically.  He had taken a pill.  He asked me what it was going to do inside him.  I quickly explained to him that he was going to be okay.  That the pill was just a way for him to take his medicine.  We talked back and forth about the fear and what pills actually do and what was going on in his tummy.  He calmed down quickly.  Because he’s rational and capable of understanding.  Which is where my frustration comes from.  Was there really no discussion of the difference between medicine and illegal drugs in all of the anti-drug speeches they gave at the school?  And was he sitting there all weekend at his daddy’s house thinking that his daddy was trying to kill him?  I mean really, how hard is it to have whole conversations with kids instead of giving them partial truths.  I suppose that depends on your idea about the truth.  I remember when Bear’s school was teaching them that alcohol was evil and having to explain to him that neither I nor his daddy was going to hell for having a beer with a bowl of chili.  That level of puritanical narrow-mindedness actually scares me.  And is it really so hard to talk to children and give them the whole story?  I don’t mean more than they are able to understand or more than is appropriate, but at least respect the fact that they are reasoning beings.  They take what you give them and draw conclusions.  And if you don’t give them enough, they will draw wrong ones.  We just need to remember that. 

November 12, 2009 @ 05:30

While listening to NPR, as Saturn’s rings were being discussed, this past week . . . 

Puppy:  Mommy, what is the radio talking about? 

Me:  They’re talking about the stars and the planets. 

Puppy:  Do you mean the solar system? 

Me:  Yes, the solar system!  (why do I keep being surprised at the things he knows?)

Puppy:  I love the solar system, Mommy.  Don’t you love living in this solar system? 

Me:  Yes, Puppy, I do. 

I am constantly surprised by what he knows.  In the way that Bear continually surprises me with his wisdom and maturity.  For a long time now, I’ve not had any real expectations for Puppy.  I have put all of those things away, like Mom’s silver and spectacular Jackie O-ish dress that was the center of all my most perfect playing dress up days.  Eventually, the day came that pretend would no longer do and I put it away.  Just like the things I imagined for Puppy’s future.  You know the things you dream when you look down at them wrinkled and red in the hospital bundle?  President, Rock Star, Olympian . . .  There are no limits.  But then they grow and they become seperate people.  Not just the tiny little personifications of your daydreams.  They have dreams of their own.  And limitations. 

The last few weeks we’ve been beaten over the head with Puppy’s limitations.  I haven’t posted much lately because it’s really hard.  Hard to put into words how tired I am.  How scared I am.  How much I feel like a battered ship at sea.  And still, even after that, how I feel okay.  Not over the moon.  But okay.  Perhaps it’s a kind of numbness.  This week I’ve dealt with a boy who is afraid to go to sleep every night because he says all of his dreams are bad, a pediatrician’s office (who manages his medications) who’s front desk Barbie dolls could not care less, and all the regular things that life throws at you on a regular day, the bills, the work, the everyday stress.  There’s something going on with Puppy and we can’t figure out what it is.  He’s wound tight.  He’s on some sort of edge.  He’s been exhibiting Autistic traits that he’s never shown before like flapping his hands and traits that have been predictable but now are less so, like melting down into screams when stressed.  And I am at a loss.  I don’t really know what to do.  But then we’ll be driving down the road and we’ll have a conversation like the one about the solar system and I’ll feel okay, for just a minute.  Just for that minute I can see inside his world and understand him a little better.  And know that it’s going to be okay.  Like getting a glimpse of the light house on the horizon, even though I’ve got no way of knowing if our ship is gonna make it.  And I can’t catch my breath.  I keep listening to this Old 97s song and singing along . . . 

Pluck me from this driftwood Lord I’ll be a better man
Raise me from the deep sea in the palm of your great hand
Let me see tomorrow and I’ll try to understand
How the sinking of my little vessel fits into your plan

September 09, 2009 @ 02:15

Puppy has transitioned beautifully to sleeping in his own bed.  The sleep walking and night terrors had lessened over the past year so we gave it a try.  Three weeks later, the only hiccup has been his bout with a fever virus during which snuggling with mom seems totally the right thing.  But here we are in the middle of week three and I’m four nights into a wicked bout of insomnia.  I may have slept all of 4 hours since Friday of last week.  This is not good.  Today at work I lost a bit of patience in a meeting.  I’ve got a couple of pressing deadlines this week and the meeting was for a fluff project and I just didn’t have the patience to nit pick over things that really don’t matter.  I found myself pushing decisions and cutting off banter in favor of let’s get this shit done.  Later in the day a woman who’s on the same committee told me she had never seen that side of me.  She is a simpering little thing in general and I know I was not openly rude or inappropriate, but still, it made me feel bad. 

What I want to do is go climb into bed with Puppy and snuggle under the Thomas comforter with him and not think about how grown up he’s getting.  He’s doing so well.  So well in fact, that I’m a bit at a loss right now as to what to do next.  I have felt like I’ve been on a roller coaster for so long.  A friend told me last week that parents of special needs children, to whatever degree their special needs may be, must put away long term planning the way most parents do.  Life becomes one day at a time.  I agree with that.  About four years ago, at the first stirrings of the thoughts that something was different with him, I began putting away those typical parenting plans.  Tee ball.  Family vacations.  What the first day of school would be like.  What kind of parent I was.  What kind of grown up I would send out to the world someday.  It’s amazing to me that anyone takes on the job of parent.  Surely if any of us really ever thought about it, we’d all say no thanks.  Here’s an entire human being that will be completely and utterly dependent on you.  Everything you say and do will shape them into the person that some day you will send out into the world.  Good luck.  Try not to make them a serial killer, k?  But that is all countered by things as simple and profound as the first time you feel them stir in your belly.  The first time you look into their eyes.  The way you feel when they fall over and give themselves a Klingon sized brow ridge while learning to pull up on the corner of the coffee table that you swore you would put the bumpers on last week.  It simultaneously makes you a god and an ant.  An ant under a boot when you make a mistake but oh, nothing compares to when you get a glimpse into their little heads that knocks you sideways.  Or when they take that first step.  Read their first word.  Develop a sense of humor.  Profound, all of it.  But it is also so easy, and such a mistake, to take those things for granted.  That those are all things that they WILL do.  But it’s really not a given at all. 

So when they tell you in no uncertain terms that for your child, it is NOT a given, just as soon as you’ve finished howling, you put your head down and you do the work.  One day at a time.  Three years ago we realized what was likely the name for Puppy’s differences.  I put my head down and did the work and then finally . . .  Two years ago we got the diagnosis.  I tackled it hard.  Did everything that we could, between the three of us, Bear and Puppy and I.  Although we don’t live in an isolated bubble.  Puppy’s got the best daddy ever, but the three of us, well, we all live on this little boat, every day.  So even though E’s the best, I don’t know if he’s ever felt as shaken by this whole process as I did.  Maybe I should ask . . . 

But as I took to heart the idea that early intervention is the key, I forgot about a lot of other things that we would have been doing.  No time for tee ball.  Head down, do the work.  One year ago he started school with his peers.  This summer he no longer qualified for any therapy, speech or occupational.  We took our first family vacation.  I began to question my choice at keeping him out of tee ball.  And this year, he’s so much like a typical child that I am now standing here wondering what to do with myself.  Suddenly I’ve got to lift my head and look around and regoup.  I know how to parent a typical child.  Bear is proof.  This week he informed me that he’s no longer saving his money to take the school trip to Europe (next summer and he’s nearly to the savings goal).  Instead he’s decided to keep on saving so that he and I can go together after his Senior year.  He thinks that will be more fun.  So I’m, by god, taking that as a big neon sign that I do not suck as a mom.  I swear that boy saves my life every day.  But since I’ve been so focused on learning how to parent an atypical child, to suddenly be standing and looking down at Puppy and seeing typical looking back up at me?  The deck is pitching beneath my feet.  Now I’ve got to figure out a place in the middle.  And I am going to need some time to figure out how to be . . .  normal. 

I know, of all the problems in the world to have.  And I am grateful.  Just for the time being, bewildered.  I’ve turned off my needs for the last three years.  What now?  I really want to think about real changes.  A whole new possibility for our futures. About how things I’d put on the shelf for myself, might be able to be taken down and considered again.  But maybe I’ll start small and just get a pedicure

August 23, 2009 @ 21:14

Things just keep changing.  Every day I wake up and it’s like a new day at a new school.  Life school.  The boys are now back in school as well.  Bear to the high school campus, all six feet tall of him, now a freshman.  With a sophomore girlfriend.  Yikes.  I took them on a date a couple weeks ago.  Hadn’t actually seen her since last school year.  She’s adorable.  But over the summer . . .  she blossomed.  She’s now this beautiful young woman.  I was a bit . . .  oh, hell with it, I was blindsided.  I dropped them off at the theater and a couple hours later picked them up and dropped her at home.  As I stopped in her driveway, she opened the door and got out, Bear in the front seat by me made no move to exit and walk her to the door.  Apparently my brain fell out of my head at exactly that moment because I poked him in the leg and mouthed “walk her to the door” at him.  He jumped out.  It hadn’t occured to him and that’s okay, because he took the cue quickly.  But as he walked away down the sidewalk with this beautiful girl it occured to me that I had just become my son’s wingman.  Best. Mom. Ever.  Saint’s preserve us. 

Puppy is now in first grade.  One week down and all is well.  Over the summer he didn’t have any speech or occupational therapy.  Yeah.  None.  I had begun calling in February to get him on the schedule for the summer.  Don’t even ask about how pleasant that process was.  During the school year his therapy takes place at school.  We have a phenomenal school district here.  It’s why I bought the house here, for the schools.  Okay also for the hardwood floors and the fabulous stained glass built in china cabinet, I’ll admit.  Anyway . . .  during summer, it’s up to us to stay on track.  It’s hard to do that.  Not one of the three different groups we work with, the school district, the Dennis Developmental Center (I highly recommend them) or the clinic here in town that provides care and therapies for special needs kids utilize one another’s evals to any great degree.  They will glance over them, yes, if you provide them, but all evaluate for themselves.  This made sense to me, until this summer.  The Developmental Center is where Puppy recieves his primary care from the Autism specialists, the whole team of doctors and therapists who know him inside and out after the two years we’ve been seeing them.  The therapist at his elementary school knows him just as well, if not better, after being in his life every day for his kindergarten year.  The summer program however, has only seen him during the summer before he started kindergarten.  So they don’t really know him like we do.  I think of the staff at school and the Developmental Center and myself to be a team.  I was ready with recommendations for speech and occupational therapy from both.  But when, after several botched attempts to get him back in the door for the summer program, they didn’t even look at his other evals or their recommendations, I was so disappointed.  They took him back and tested him for one hour.  Yes.  ONE.  And a few days later I got a cold clinical letter in the mail telling me that he did not qualify for the therapies.  His skills tested (in that one hour) in the typical range.  Maybe I’m being ridiculous.  Maybe I should be doing a crazy happy dance that he did not qualify.  But I just didn’t think that the one hour they devoted to that decision could possibly be accurate.  So, we had a summer back at our old daycare center.  Thankfully staffed with qualified teachers and with a structured environment only barely relaxed during the summer months.  Relaxed being defined as regular curriculum interspersed with the awesomeness of a weekly super soaker day and other such appropriate activities.  Oh, to be six again, yah?  I think a great deal of my work stress could be absolutely relieved by a weekly super soaker day.  Don’t you? 

So now he’s on to first grade, with no real prep.  We’ve spent so much focus and energy on the prep for the last two years that it has left me feeling pretty at sea.  Maybe it’s time to get over that and get happy.  Relax for a bit and think about something different.  That’s a change I could totally live with.  Just as soon as I figure out how.