And seriously pissed off.

Almost a week and a half ago, I called my son's doctor to get a refill for his Adderall prescription. Because it is a controlled substance, I have to bring the actual hard-copy of the prescription to the pharmacy, so I've been waiting for it to arrive in the mail. By this past Friday, a full week after I'd originally called in the request, I still hadn't gotten the prescription, so I called the woman in charge of refills again, explaining I only had three days left of meds for my son. She called back that afternoon and said she'd mailed it out on Wednesday.

It is now Monday afternoon, and I still don't have the prescription because the woman, in all likelihood, it was never mailed out at all. I have now put in two calls to her, once on Saturday so she'd hear the message first thing this morning, and again this morning. She has not called back so I've placed an angry call with the doctor's nurse explaining my situation.

This is not the first time something like this has happened with the medication refills that originate out of this woman's office, though it is the first time it's happened with the Adderall. In fact, every time but one that our pharmacy has faxed in a refill request, it has gone unanswered as my son's med supply steadily dwindles, and they've had to fax two or three times more (in addition to my own phone calls) to get the woman to actually do the job she's paid for.

I am seriously fucking pissed off today. Éiden is home from school with a high fever and because of this woman's laziness, I now have to cart him out in the cold rain, drive to the University, find parking, pick up the damn refill that should have been here last week, head out to Target pharmacy, wait twenty minutes to an hour for them to refill it and be back home by 3:30 so I can get Arie when the bus drops him off at home and take him to his 4:00 appointment. And, right now, it's 12:50. This is absolute, fucking bullshit.

ETA: I just got off the phone with the woman's supervisor who not only apologized for all of this, but said that either she or someone else would be waiting for me at the front door so that I don't have to find parking and traipse my sick son through the rain, for which I am immensely grateful.

His friend from school, who is also taking swimming lessons at the same time, saw him sitting in the hot tub.  Arie is six now, so he is allowed to sit in the tub for five minutes, rather than just sit with his feet in the water.  Arie's friend got a huge smile on his face and came over to sit next to him.  They sat there talking like two old men rehashing their day.  I have no idea what they said to each other other but whatever it was, they were thoroughly enjoying one another's company.  It made me feel so good to see my son, who just a year ago would look past kids saying hello to him as if they were inanimate objects, sitting and conversing with his friend.

This afternoon Arie pulled out an easel in front of our house, got together paints, brushes and paper and proceeded to attempt a painting in front of our house.  I say attempted, because for the first twenty minutes or so he loudly yelled and hollered and otherwise made  a scene over each tiny problem he encountered.  The wind was blowing.  The paper had slightly torn.  He wanted to tape the edges to keep the wind from blowing the paper but the tape was in the house.  The tape had fallen to the ground and gotten dirt on it.  The paint brush was not working.  The paint was not working.  The paint was the wrong color.  The colors were mixing on the paper.  And so on.  After hearing quite possibly the twentieth sigh or grunt of disgust (which I really only have myself to blame for hearing since he was only mimicking me) I suggested that he put the paints and easel away because he certainly was not having any fun.

"I will not put away the paints and the easel.   What do you think I am doing?"

"It sounds to me like you're complaining," I said.

"No I am not," Arie replied.  "I am complaining and painting!"

Arie walks off the bus this afternoon.  His stoic little face betrays no emotion one way or the other as to what kind of day he might have had.  This is normal for him.  His face is almost always stoic, unless he is outraged or laughing, as is my own and as is my grandfather's.  Arie is holding a large pink ball in his arms while a baggie full of skittles hangs from his hands.

"Look what I got," he tells me, showing me the ball.

"I see.  It's a ball.  You must have had a good day."

Arie turns his back to me as he puts down the ball and the skittles and removes his backpack from his shoulders.

"I did not get to a one, a two or a three today," he turns to tell me, standing in the doorway to our house, his mouth just barely turned up at the corners so slightly that if you did not know him you would never even notice it while his eyes glow warm with pride.

"Oh, Arie, that's wonderful!" I tell him and give him a hug.

"Yes, it is," he replies seriously and hugs me back.

"I'm going to get to a three today," he says, happily.

I look up from his communication notebook, where I'd been writing to his teachers about how he seemed to be in a good mood, to see Arie beaming at me.  Proud.  As if he'd just told me he was going to climb to the top of the monkey bars without help or ride his bike without training wheels or finish the math program at school with a perfect score.  A three, however, means that Arie has run out of warnings and more than likely is hitting, kicking, head butting and throwing things in addition to screaming and absolutely freaking out.  A three is not a good thing, certainly not something he should be happy and beaming about.  Yet he often tells me before school that he will get to a three with this same voice and expression on his face.  Sometimes, as he relates the events of his bad days, he smiles at these remembrances as well, as if he were telling me about a wonderful birthday party at school or how he'd kicked a home run in kickball.

Often, on the days he tells me he's going to have a bad day or get to a three, he does the opposite, but not always.  And some days he seems to be in a wonderful mood and I'm sure, sending him off on the bus that he will come home with a good report and on those days he returns with quite the opposite.

I never know what will happen with my son.  I never know what to expect.  I never know what kind of day he will choose to have or how he will behave and I feel sick about it.  I feel this sick knot in my stomach throughout the day as I wait for a phone call or wait for him to get off the bus waiting for a report and wondering what kind of day he had.  I feel sick and anxious putting him on the bus in the morning, not knowing what the day will bring.  I feel sick and anxious walking to get him from the bus in the afternoon.  It is not a good feeling at all and I just don't know what to do about it.  I'm sad, and anxious, and angry, and tired, and frustrated and today I feel utterly and horribly hopeless.

haddayr sent me this short article written by a 48 year old  about how she was recently diagnosed  with Asperger's Disorder.  Having a son and a friend both diagnosed with Asperger's and having certain Aspie tendencies of my own, I was really struck and delighted by the last paragraph of her article:

I could tell you so much more, but instead let me share one last insight. Don't pity me or try to cure or change me. If you could live in my head for just one day, you might weep at how much beauty I perceive in the world with my exquisite senses. I would not trade one small bit of that beauty, as overwhelming and powerful as it can be, for "normalcy."