I know why I'm tired. I know there's not a whole lot that can be done to fix my tired, or Seymour's.

I also know that those of us who are stressed find it easy to judge other people and become righteous, because we know that we, or our friends, have it worse financially or logistically or emotionally.

Oh, wait, that last one doesn't count, does it?

It should. I tend to believe people who confide that they're overwhelmed, even if their scenario appears less intense than mine. Because I'm not living their life, or trying to keep their bubble from popping. I wrote about our tendency to compare and judge stress levels somewhat thoughtfully in July. In this, a less thoughtful moment, please know that those with uncharitable comments about the steam-venting and consternation-processing that follows can fuck right off.


Abilify at its current dose does not seem helping Leelo as we'd hoped. It has been three weeks, and so far we are seeing:

1) Increased irritability, manifesting in more intense and focused bouts of aggression
2) Constant hunger/unrelenting requests for food
3) Increased spaciness/distractedness (as noted by teachers and therapists)
4) Increased sleepiness after taking the drug, but
5) Early waking, at or around 5:30 AM. Occasionally as early as 3:30!
6) Poop witholding! Even with resumed extensive teletubby toilet time

This means that, when Leelo is home and without an aide, which is most of the time, I do very little aside from monitoring him so he doesn't hunt down Mali and deck her, distracting him from asking for food, or trying to get him to stay on task. There is very little successful setting Leelo up with activities while I get things done. This means I currently spend very little time with his sisters. The girls are put out to the TV pasture or sent into their room to play.

This means that even making a simple dinner is an exercise in panic, as I monitor Leelo and his activities on the counter, the girls wherever they are, and ensure that they do not cross paths. I almost had a heart attack when Iz had her friend Violet over for dinner two days ago, trying to play the role of the cheerful mom who was providing a regular fun dinner for the girls (make-your-own paninis) while surreptitiously keeping already-fed Leelo from attacking me from behind.

This means that we shouldn't go anywhere with Leelo. At the moment I'm not even taking him to the grocery store. I certainly am not doing any errands with him and Mali in tow, not even our previously ritualized Tuesday morning run to the local coffee shop.

This means that it's not a good idea for us to have people over, not unless they're aware of what they're potentially getting into, and have heightened perimeter awareness and fast reflexes. Iz's friends are starting to realize that our home is not the happy fun place to visit that it used to be, which makes me worry for Iz's social life. I am not sure what we're going to do with my Mom, two brothers, and all of their families spending over a week of Xmas joy with us.

I am so scrambled that I didn't make my bed yesterday, for the first time in over a year. That activity, superfluous as it seems, is a sanity watermark for me. Even on days on which I've forgotten to brush my teeth because the bus forgot to pick up Leelo, my bed has been made. I can walk by my bedroom and feel a flash of satisfaction that one small part of my life, at least, is tidy and neat and predictable. But sleep deprivation and overwhelm have stomped out what remains of my already lackluster organizing skills, and not only did the bed not get made, but I forgot about it until I was running out the door to get the three kids to their three different morning destinations and had no time to go back. I am trying to keep a list of all the everything I'm supposed to be doing, but it is so overwhelming that, instead of picking a list item after Leelo goes to bed, I generally decide to watch an episode of crappy TV (and instantly fall asleep on the couch anyhow). It's taken me three days to finish this post, and I have a slag heap of unfinished moans from the past month. The only manageable time is now, in the mornings, while the girls are still in bed.

I am really sick of being hit, head-butted, scratched, shoved, and pinched. And of flinching when my son is nearby. Emotionally sick. Because, occasionally, Leelo is still being sweet and snuggly and giving kisses and asking for hugs, and being the wonderful boy we love. But that Leelo is currently missing more than not.

Dr. R, Leelo's meds doctor, suggested that Leelo's current dose (5 mg) might be insufficient, and recommended that we try dosing him another 5 mg in the morning as well as in the evening. Supervisor E concurs, and said that in her experience an insufficient dose of a drug like abilify can exacerbate rather than alleviate behaviors.

So I have given Leelo a morning dose of abilify today. I hope it helps, hope we have an even slightly more sociable and settled Leelo by the time relatives arrive on the 19th.

And in the continuing theme of whimpers rather than bangs, I dutifully record that this is my 2,000th blog post. Woo-fucking-hoo. I had certainly hoped Leelo would be a happier, better adjusted boy by now. Maybe by post 3,000. If we make it that far.

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  1. dinner is coming.. I have Monday delivery.. please place orders now.

    love you and find you amazing as always.

  2. Honey, I am praying for you and your family. Every day.

    Love, Laura

  3. Anonymous11:11 AM

    You don't know me, and live a couple thousand miles away, but I wish I could come over and make your bed for you. I think you're amazing and am rooting for you all (and for a much more relaxing and manageable new year).

  4. What Laura in L.A. said.

  5. Anonymous12:21 PM

    Hugs. Let the bed making go. When things get rough like that you gotta cut yourself and your family some severe slack.

    We have tried M on Abilify as well and had terrible results. It caused her severe aggression and outbursts that were way bad. She has had great success with Strattera however. I apologize if I told you this already. I know how med. advice can get annoying. I would be hesitant to increase it but I am only going from our own experience with that medication and ones like it. Seroquel, Lamictal and Clonodine has also helped M with the behaviors you are describing.

    My heart goes out to you because we have been there and back and been there again and again. This time of year is always very tough on M. Something with the energy Christmas season brings, I think.

    Hugs. I hope you can get some time away for laughs and fun.

  6. Anonymous12:31 PM

    I'm not eloquent, but I just had to write and try to express my sympathy with your current situation and hope that you can figure the right meds out for Leelo. Best wishes. -Anita R.

  7. I also would worry about increasing it. Don't give it too long and the increased dose. The positive effects we saw from Abilify were pretty immediate.

    What about giving Respridal a go after a med-free holiday? If one dosen't work for some, the other might.

    I have had many of those beginning of the days at 3:30 and they are some of the loneliest times in the world.

  8. Anonymous2:17 PM

    Wishing you (and yours) peace and a much, much easier road in the coming days and weeks.

  9. Man, I'm sorry. Max was irritable today and hitting and it frayed my nerves, I can only imagine how you're feeling. I hope adjusting his meds helps. And, I know what you mean about making the bed, I also try to do it everyday, but sometimes I just shut the bedroom door when I need to deal with craziness.

    I hope you can get some time to yourself in the near future--you sure deserve a sanity break.

  10. Thanks all. Seymour and I had a fairly good Sunday. Leelo seemed fairly comfortable in his skin, we went to a nearby Xmas tree farm and roped ourselves an Xmas tree, we have simplified dinner by joining the cult of the CrockPotters, and I got to hang out with some good friends. All helpful.

  11. You should always know that I am constantly sympathetic and hoping for better days for you all, even if I don't write that out for the umpty-umpth time.

  12. I think you and I are in the same boat of our children seeming to go deeper and deeper into their autistic selves as they get older, rather than the opposite. We all hear the 'positive' stories of recovery or total mainstreaming by 'x' age, and it hurts, hurts, hurts to not be able to experience that too.
    Thinking of you guys and wishing you all strength and peace.

  13. Thank you for this post, Squid. I knew I remembered you posting something about Abilify a long time ago, and I am so very glad I found the post. Jaymes has been on Abilify for about a month, and is beating the living daylights out of me, my husband, my daughter, and the dogs. He's never been violent, but his behavior is exactly what you described Leelo's behavior as when he was on Abilify. It really helps to think that the meds could likely be causing this, and that taking him off the Abilify and back to something else will bring back my cuddly boy- instead of this kid who makes me bleed and gives my 3 year old bruises.


Respectful disagreement encouraged.