A very hard day at the end of a string of very hard days

It's been a while since I did a straight barf-style download. Blarghagahgh:

Today was a very hard day at the end of a string of very hard days. Just so tired. Literally no break for too long, except occasional 10 minutes of bath reading in the AM. I don't like living this way. It compromises parenting skills and patience, and is not ideal for anyone, no matter how many other people have it worse or harder or more intense.

Anyhow. It's been several weeks of child illness, therapist illness, partner traveling, and a full eleven days of Leelo out of school with a mom who needs to work at least part of every morning and has not had a break during the day for weeks. That latter isn't really fair to Leo, but I had to decide whether it would be better for my son if I was distracted by work or too sleep-deprived to supervise him safely, because if I don't work all morning that means I'm working far past bedtime. I must really be getting old, as I tend to err on the side of sleep more frequently. Leo did a lot of fantastic puzzling and spontaneous drawing (usually with chalk on easel) while waiting for me to finish my damn work shifts (which are going to be shorter starting next week thanks to my awesome awesome boss). Working with him at home is doable, but guilt-wracked.

And Wednesdays are always grueling, six straight hours of child errand running and hauling, though the payoff is Costco pizza for dinner so we are always motivated. (Except Leo who has been having a PB and J for dinner for six years and doesn't seem to mind.)

The day started off well -- Leo went to school! -- and then a friend called to let me know how crappily the district budget crisis meeting at her son's school went (that would be at Leo's resented former kinder site, get a copy of My Baby Rides the Short Bus for the formal rant). She said that a parent stood up and asked why all special ed kids couldn't be institutionalized, so that "regular" kids could still have their music and dance classes. Reader, I burst into tears. And then I tweeted the hell out of this SpedPro article citing my friend Lea's guest post on the Cost/Benefits of Special Education. I think Jocelyn Sloan's reaction said it best: "I pay the same taxes [that woman] does. Therefore I expect the same benefit: educated children." I also think that original woman is a total asshole. Please forward the SpedPro article to as many people as you can, to help them understand that kids with special needs do not steal education funds from regular ed kids! Or print the article out and nail it to foreheads that are particularly thick. Your choice.

Later I traveled to Leo's school for a Leo team meeting. We (Supervisor M, E, and Sage, Leo's dear dear speech therapist) are worried that our boy is not getting sufficiently rigorous learning at home or at school, and is not going to meet most of his IEP goals. (Though we may have set them too high to begin with, as he was on such a radiant arc during IEP April 2009). I am going to talk with his school staff about accountability and progress reports, Supervisor E and M are going to help me and Therapist V set up core home "learning" centers both in Leo's room and downstairs to supplement IEP goals. Yes the goals are the school's responsibility, but I want Leo to learn them regardless of who does the teaching. There's no room for petty or finger-pointing when it comes to my son's education.

Leo's behavioral psychiatrist then called. He wants to increase his Risperdol dosage, adding in another .5 mg right before he goes to school for 1.5 mg/day total. We think his agitation at school has less to do with medication, and more to do with the aides rotating through every 10 weeks and never really getting to know him, not really, but hey -- we've been wondering about upping that dosage anyhow. If it helps, and his aggression and sleep patterns stabilize (he was up tantrumming on Seymour's shift until around 10 tonight) yet his OCD stims persist to an interfering-with-instruction degree, then we will consider adding in anti-anxiety meds Zoloft or Luvox.

Picking up and dropping off of various trumpet-playing and jazz-dancing sisters commenced. Leo was a good sport through various interstitial errands, but was not in the mood to wait for Mali to get out of her dance class, and got quite aggressive as the girls and I walked with him from the studio to the car. Could we chance Costco? We've had a couple of really bad times at Costco. Iz pleaded with me not to go, said she didn't want to risk me getting upset. Which was so sweet of her.

I reassured Iz that we would be fine, that we would leave if anything went wrong. That Leelo hasn't had a bad time as Costco in months. And it was fine until we exited and started walking towards the car and the girls couldn't break their cycle of completely and utterly stereotypical sibling bickering and yelling. It was maddening, both to me and Leo.

Maddening especially as I had just been talking with Iz about sticky interactions with peers, in trying to take her ego out of the equation, in asking people "what makes you think that?" instead of striking out or judging. In reverting to her comic book Buddha's strategy of "I don't accept your angry words, you can keep them" when absolutely necessary. But she can't not react to Mali. She can't.

And I realized that I can't control my children, I can only control how I react to them, and how I model for them. So after five minutes of the girls refusing to stop despite pleas and threats and reassurances that not reacting to your antagonizer really does work, and as Leo's agitation increased and he kept hitting and pushing me, I disengaged. I told them I would give them a demonstration of how effective not reacting can be.

We loaded up the car. I turned on our local classical music station, and I didn't speak to them or react to Leo's pushing and hitting me for the next 20 minutes, not until we arrived home.

Leo stopped fairly quickly. He needs a steady supply of reaction fuel. Iz wailed, then wilted, then went back to reading the copy of Anne Frank's Diary that she'd swiped from Susan.

It took Mali longer, because she has the tenacity and craftiness of an oft-ignored third child. First she announced to Iz that I wasn't speaking to them because I didn't like them, even though I'd assured her moments before that I always love my children even when I don't like the way they're behaving. Then she asked me the kind of deep, complicated questions that usually keep me talking for hours, this time, "Mommy, what is a god and why did the Ewoks think C-3PO was one?" But eventually she turned back to her book.

By the time we pulled onto our street and as we crested the summit of our hill, with its truly glorious view of the San Andreas fault's valley and the rain cloud-kissed Santa Cruz mountains behind, Delibes' Lakme: Flower Duet was playing and the car was otherwise silent. For a few minutes. For a few inhalations.

And then we walked in the front door and chaos resumed. I would be okay with taking a small break from it in the near future.


  1. You are doing such a beautiful job for all of you children, even on days when it doesn't feel like it. You are modeling how to live a full life, how to manage demands as healthily as you can, how to love someone even when you don't like what they're doing. We should all do as well with our kids.

    Hang in there, and continue to take care of yourself.

  2. Oh goodness. That chaos sounds brain hurting. You have a circus around you that is not always the entertaining kind. You sound like you need a break, a rest. I hope you get one soon. If modelling good behaviour worked all the time, oh what parenting joy. You work amazingly hard. I admire your tenacity and mood amongst the current chaos. xo

  3. Frankly we wouldn't have braved COSTCO with all that happened before!

    "Extinction" via classical music turned up to the max---not a bad idea.

    Hugs. And a glass or 2 of whatever you'd like.

  4. It sounds like you need a serious vacation! No play is not good for anyone.

  5. Oh yes... I was at a meeting once where an angry parent was huffing "when is MY child going to get the same attention HER child is getting?" Nice. 'Cuz that's all special education is anyway- extra attention. Ugh.

  6. Ugh. That sounds exhausting. Truly exhausting!

    I suppose one of the benefits of having 2 boys with severe autism is that I don't have to put up with sibling rivalry. Sam and Noah don't really interact with one another unless one of them has a toy or book the other wants.

    However, I am tired of having a kicking induced back massage every time we get into the car and one of them has a meltdown! Which is basically every time we go somewhere.

    Which would be why we hardly ever go anywhere.

  7. marelne2:25 PM

    I have been reading your blog for a while and I am always impressed with your level of keepingittogetherness. I really do NOT know how you do it! That woman at the meeting does not have a soul..that is what i decided.
    I am actually commenting about your link to your article about facebooking your birth son. I read that article months ago, and did not realize that you were the woman that chose that path. I have an ENTIRE new respect for you and your every day life. Sometimes when I have a particularly rough day i sometimes think what would lelos mom do. I am in
    absolute awe of you AND your partner. Please keep in mind all of the people that you touch every day without knowing it, all the lives you leave an impact on without even knowing it. I cant tell you it will get better, but I can tell you how AWESOME you are, and how you inspire and educate all who come into contact with. I wish i could express this better but i will leave the amazing writing to you.

  8. First...Shut.Up. Some bitch really said that at a school meeting? I'm wondering if she's rec'd any death threats yet? Seriously! Who says that kind of stuff out loud?

    And second, perhaps mercury is in retrograde or some other thing we can blame crap on. It's been a bit wonky around here too. Looking forward to a little more sunshine, both literally and figuratively.

  9. Today Seymour sat on the kids and let me sleep in until almost 10 AM. The world seems freshly scrubbed and fully of possibility!

    Sunday, understood. Do their behaviors wax and wane? These past two weeks I've been opting out of taking Leelo places more than usual, but in a couple of weeks it'll probably be fine.

    Marelne, that is a lot of kindness. Thank you for listening. And I hope you never see how awful my house looks, as you will lose any respect for me.

    Deb, today was a sunshiny and notably smoother day. How 'bout for you?

  10. I would be super happy to do the dance class pickup for Mali every wednesday as Moomin does his class. last time we sat together and drew pictures and sharpened all the colored pencils and we watched the big kids dance and commented on what they were up to. I could also read to her. no problem! and then drop her off with you (pizza or no) If that makes thing any easier (and then I get to see you reliably, too)

  11. Also, in return, I will totally call you (or someone) when I have a day like I did on Monday and Tuesday. Holy cats. You were right at coffee... I should have called someone! Anyone !

  12. FWIW, my son does well with Risperidone complimented by Luvox. He gets both at 6pm and by 8pm he puts himself to bed. If the OCD gets crazy, you might want to check for strep.. or crazy amounts of echolalia... could be strep.

    Healthy wishes.


Respectful disagreement encouraged.

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