Asperger's World

I've been overwhelmed.

About a year ago Christopher was diagnosed with Asperger's; we moved to a new home and over the summer made friends with my ex and the girl over whom he left me. Fall happened; spring is almost over, and Christopher has had multiple health problems: his platelet count, for reasons not yet definite, has run low every time he's been ill. This means he is in greater danger of bleeding if he gets a virus; while so far they have not been critically low, one must monitor, because if they suddenly plunged he could hemorrage spontaneously--"brain bleed," they said, and I cringed. It's not likely. But damn, it's been mentioned. So every time he gets a virus, I get worried.

Then he's thrown up at school multiple times and been sent home. I've missed some work. Then he fainted at school, and uncertain how much was emotional/psychosomatic and how much of purely physical causes, I mentioned his apparent dislike of school to his doctor, who said "Not now! I'm trying to attend to him. Don't you see how green he looks???"

He goes from extremely pale to red in the face depending on exertion. She called the fainting "syncope," said it is common among children, told me to keep him hydrated and give salty snacks; she sent us for an EKG. "Okay," I thought, "The hematologist has essentially said no news is good news--indefinite is good since it might go away and would certainly be treatable; now the pediatrician is saying that this is not so unusual." But the EKG came back with an irregular rhythm so they called back to tell me we had to have an echocardiogram. The technician told me, after my 48 hour panic over the need for more testing, that she couldn't say anything specific but not to worry; nothing critical/major was going on. The cardiologist would determine whether there was something he wanted to see Christopher back for. I'm told by friends there's a chronic but not lethal condition involving valves. It may or may not be something like that. He has all they symptoms, though, so I'm waiting to hear.

He complains often of not feeling well, and I no longer know how often to get him to the doctor or keep him home or take him to work with me and how often to push him out the door, backpack in hand for the next "A+" on his report card. Academically it's under control. Socially I hear no complaints, but that's part of what scares me.

And now the encopresis has returned. He's had a couple of accidents recently in that regard as well as lots of bed wetting and an unfortunate incident involving my bad timing in picking him up from school and his incapacity to keep the waterworks shut down by squirming all the way home. My car smells like urine. So does my house, but once I wipe the toilet and surrounding area, I think of the dogs, cats, lizard cages . . .

None of this is to mention the effects of the economy on me. My ex. could lose his teaching job and me my child support. At my own job they have avoided pay cuts (euphemistically called "sebatacles") by the faculty's volunteering to teach one extra class for free for the next year or two. So now I'll be teaching 4 courses then 5 or 5 then 4 rather than 4 and 4. I am supposed to be doing all the other things that go with my job: research, committees. Research??? Ha! I've finally gotten into a subject that might get me out of my long term writer's block and I'll be teaching extra next year--as well as a course this summer hoping to save some money to offset the possibility of lost child support.

Yesterday I burst into tears when my two teaching assistants in a mega course I'm teaching threatened mutiny--or so it felt--wanting to reserve the right to work with another professor next year. The idea of training them was so that i'd have them for a couple of years. Someone said something about the course being disorganized. I told them the working relationship was "not a marriage." I thought of my ex-husband John, whose rejection continues to sting. I tried to sit and work, to keep quiet, to make the hurt feels go somewhere until I had time to rationalize them away. But it wasn't 30 seconds before an impulsive burst out of my chair preceded my saying "My son has a platelet disorder and something going on with his heart, but God help me if I've been disorganized this semester!" I left explosive, crying. I tried to figure out whether flight or fight was best; I didn't know where to run away to. I sat crying explosively outside for around 10 minutes then went back in to apologize. I eventually went home with instructions to my night class to do some online discussion.

Am I allowed to swear here? At myself? Otherwise I can't quote what I said to myself about myself yesterday.

When I got home there was a message from Christopher's teacher: he was feeling sick and needed to come home. I was an hour late for the message. By the time I got there, school was out. I liberated him from his after school care.



Please forgive my coming and going so much. Are you guys still out there???

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Josh Comment by Josh on December 14, 2009 at 11:49pm
Listening to the same song over and over again is very common with Aspies. It's one of few things I can do to calm my mind down sometimes. I wouldn't discourage this behavior.

I listen to music every night when I get home from work. Sometimes for several hours depending on how much unwinding is required. It's self regulation medication on demand with no side effects.

Imagine you're driving a car going about 80. You cannot stop or slow down, all you can do is make turns. Sometimes the car makes turns without you knowing it. You really cannot control it. The car just reacts to something and there you are, driving down a new street, still going 80. Rinse, repeat.

I'm not sure if that's the most accurate visualization of being inside the head of someone with stimulation and executive function issues. It's the best I can come up with though. If I've had a big day, my head is moving significantly faster than desired. A lack of filtering means my thought process moves like the car. There is constant activity, but I don't have complete control. Anything could cause me to think down a tangent train of thought. My brain just HAS to be doing something at all times. I cannot control that, I can just steer.

Listening to one of my current favorite songs can put me on cruise control. I can just close my eyes and not think as much. It can get me from 80 down to 50 where I should be. Think of it like the bumps on a highway that's made of concrete. The type that has sections. The repetition of the music is like the bumps. It's constant and you know what to expect. It kind of lulls you to a slower speed.

It's no risk medication on demand. Who cares if the behavior is considered normal or not. It helps allot of people regulate themselves.

See if having him listen to music the next time he's worked up helps him. It's worth a try.
Julie Comment by Julie on April 9, 2009 at 12:50pm
Thanks for being there Georgia. The echo cardiogram came back normal, though Christopher's heart rate does escalate at times. I think anxiety combined with his being somewhat out of shape is the problem.

He's suddenly started some very aspie behaviors I haven't seen before. Even my ex, ordinarily oblivious, commented on it. He starts mumbling "oom-ba, room-ba, moom-ba," humming sometimes; he gets agitated more. The other night, Christopher had me restart a song that's part of a play list we listen to before bed again and again; at 1:30 in the morning he was still waking me up to replay that song. I grabbed his shoulder and looked in his eyes and told him he had to LISTEN this time and go to sleep; I wouldn't start it over.

"I don't listen," he said--and I realized the obsessiveness had to do with my having told him in another context entirely that he wasn't listening to me. It's as if the words had come unrooted and got attached to the experience of night time music meant to be soothing. It had become a frenzy-making experience just to "listen."

We will survive.

best,
Julie
Georgiana Comment by Georgiana on April 8, 2009 at 3:48pm
oh Julie, you've had such a rough time. I'm so sorry. I've been away from the page for such a long time....I know I haven't chatted with you for awhile, but I will always be willing to listen to you vent if needed!

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