Tag - medication

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July 19: A Little Oops Goes a Long Way
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July 14: Another Day
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Not Sleeping
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Star Date: Jan. 2010

July 19: A Little Oops Goes a Long Way

After five nights of being on the risperdal, we are seeing some amazing things.

He hopped off the couch, went to Twins Dad and said “Go Potty? Okay.” marking the very first time he’s ever initiated at home. I don’t think I can overstate how huge this is: 90 percent of what I say to John has to be: “Do you have to go potty? John, potty? Potty?” If the answer is yes, then he repeats the word “potty,” if no, his answer is to ignore me. It is a reliable method of keeping him dry, except when it’s not. Being ignored is not a satisfying answer when I see him doing the potty dance.

And just hearing myself ask him over and over makes me feel that one day he’ll be telling a therapist “…all she ever cared about was if I had to go potty.” Wait — that would be great, right? I digress.

He told someone he had to go! which means he’s recognizing the signs in his body, which means he’s a little more focused. Yesterday while at the pool, he told me too —”Go potty? Okay.” We rushed to the bathroom, arriving just a little late. He looked at me and said, “Oops!

He said “Oops!” It made my day. Oops tells me that he knew he made a mistake (a forgivable one since I showered him with praise for telling me he had to go). Oops also tells me he wanted me to know he made a mistake, that it’s not what he intended. I don’t know if or when he’ll independently take himself to the bathroom, but I am so hopeful now that he’s made this leap.

There has also been glorious sleep. The first four nights, he still awakened and rushed to our bed, but instead of hysterical laughter there was silence, instead of manic jumping, there was peaceful slumber. I don’t know if it’s here to stay — I feel like tossing salt over my shoulder just for sharing the words…

Last night, John stayed in his own bed.

July 14: Another Day

I’m so grateful for this community. Thank you for your messages (and calls!). As they say, tomorrow is another day — and today was a better one.

We met with John’s neurologist and after much discussion, have decided to try risperdal to see if it will decrease his manic night-time episodes and maybe even lessen the daytime stims. It feels like this awesome decision though, which is why I made Twins Dad come home in the middle of the day just to talk through my fears of anti-psychotics with the neurologist. We are assured the dosage is small and may or may not help, it’s all a shot in the dark. Not the vote of confidence I’m hoping for, but…

I am desperate. Desperate. And I know medication has helped many of you. Our neurologist assures us the dosage is tiny and it might actually do wonders. Please, please, please. Please sleep.

I worry that he’ll turn into a different boy. Yes, the stims are excessive and often prevent him from focusing and learning, but he’s so exuberant otherwise, so alive. Part of me fears that will be tamped down. I don’t want him to change, I just want him to sleep.

Not Sleeping

In my humble albeit exhausted opinion all autism research should focus on sleep and the lack thereof.

Ohmygodohmygodohmygod. There has to be some medication that will keep my child asleep at night. John has been on clonidine for months now and our nights used to look like this:

  • medication slipped into a small bowl of yogurt one hour before bed
  • one hour later: asleep
  • 2 a.m. running and crashing into our bed
  • 2:15: asleep until morning

Then about a month ago John started waking up absolutely drenched in sweat, like his body was afire. I’d change his pajama top and put him back to bed. An hour later he would still be awake. Had it stopped working? It seemed to me that the clonidine was now having an adverse effect. I called the neurologist, told him my fears and he said we could start weaning him off of it.

We’ve halved the dosage and are experiencing manic nights again — just like the good ol’ days. He hums in the dark, a new vocal stim. He yells “Downstairs?” and “Mommy’s itouch?” while pounding the pillows and pressing his cold feet into my back. He holds his hands tightly over his ears. I strain to hear what he’s hearing… a clock ticking, a fan gently whirring…I barely notice it, but it’s assaulting his senses here at 4 a.m. in the dark.

With an average of three hours of sleep a night, I am the saddest, angriest, clumsiest, barely functioning ball of nerves. I have zero patience and what feels like zero control over my life. Melatonin is like popping candy for all the good it does these days. Where is all the research on this problem? I can deal with autism, really, but this? This is my kryptonite.

Star Date: Jan. 2010

These are the voyages of sleepless John, as told by his exhausted mom.

Night comes and we start off hopeful. The boys go to bed with minimal fuss and we settle in for some tivo’ed show, like House or Ace of Cakes, or even a game of Boggle. We sigh, content for the moment, the day and its hurried pace behind us. The clock gets closer and closer to midnight. Husband goes to bed at 11 and the mom, who is just a little greedy, hangs back — loathe to leave the quiet, her glorious time alone.

And every night, of course, she thinks This is the night it will be different. But we are under siege.

January 7, 2010, 1 to 6 a.m.: John is up and ready to go! Five hours straight! His endurance is remarkable, his commitment to the same laugh track, earsplitting.

January 8, 2010, 1 a.m.: John dives into our bed and conks out, sleeps through the night! Is there a full moon? Which planets’ alignment produced this miracle? Please, dear god, how do we replicate these conditions?

January 9, 2010, 12:45 to 5:00 a.m.: John is up and jumping! Tonight’s entertainment features Elmo and silly talk, but then he crashes after a mere four+ hours until nearly 10 a.m.

January 10, 2010, 1 a.m.: It’s 1 a.m., folks, John doesn’t want to be late! But inexplicably, he falls back to sleep until 2:30. Another energy burst hits and he is up until 6 a.m. And then crashes until 8:30. Mad dash to school.

Crazy times around here. People tell me I look great for not getting any sleep. The truth is the body adapts to sleeplessness. It doesn’t function very well, but it adapts. We’re getting back in to see the neurologist and looking into a sleep study. Thanks everyone who commented and emailed me with suggestions.

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