Archive | December, 2012

Plagues continue

30 Dec

I am so done with drama.  I am so done with plagues.  Guess what?  I am so done with 2012.  Maybe 2013 will be better.  I mean, it probably WON’T be better, but maybe it won’t be worse, and things not getting worse sounds better than things getting worse.  Do you like how I’m thinking positive here?  It’s the power of positive thinking.  You should try it!  

The other night at about 1:45 a.m. I was woken from my sleep by the dulcet sounds of Aaron screaming, “Fire! There’s a fire outside!” I looked out the window and there was a big electrical fire in our front yard. WTF? The thing was bright and hot and super super scary and since it was a live power line, it just kept burning and burning. I picked up my cell phone which was next to my bed, thankfully, because we had no power, of course, and called 911. Aaron grabbed coats and children and so on, and we evacuated the house into the back yard.

The firefighters came and said we could go back inside because the ground was wet and they fire wouldn’t spread to the house. They waited outside for the utility to come and shut off the power, so we went back in and I tried to get the children back to sleep while listening to the ominous zzzzst zzzzst of the electrical fire (it was the only noise, with the power out) and watching these bright as hell flames outside my windows. Not so much relaxing.

After a bit, the utility came with these enormous trucks and bright lights and they put out the fire. Then they repaired the power line and even got our power back on, which I did not expect, after a fire like that.

So, we’re fine, the house is fine, and the  next morning it was like nothing happened.  Except we were tireder.  Even tireder than normal, and normally, we’re pretty tired.

And while I’m telling you about all the plagues that have befallen us, can I just tell you that on Monday, Baby Peanut has to have a procedure on his eyes?  Oh, it’s just a little thing, for blocked tear ducts.  They’re going to unblock his tear ducts and possibly place tubes in them.  He’s needed this for a while.  His eyes are seriously goopy.  Sometimes they are so goopy when he wakes up that he can barely pry his eyes open.  And the goop is irritating.  If I try to wipe it away, it hurts him, and sometimes his eyes look bruised from the goop.  So yeah, necessary.

But Baby Peanut!  Having a procedure!  He’s just a little little mister!  

One of Chaos’ teachers from her daycare is coming here to play with her and I am frantically cleaning because I don’t want him to know that I am a slob.  Also, the way we live, it’s been on our mind a lot.  We’re thinking that our disorganization is contributing to Chaos’ disorganization, so we’re trying to do better.  With mixed results.  You know, too much crap, too little space.  But I did a lot today.  Not enough, but a lot.  My mother is coming here too, on Monday.  I will clean and scrub and then she will say, “I don’t know how you live like this.”  I am not worried about that – I’m not really sensitive about it… but I think it’s nice when Chaos feels more organized because the home decor theme is more “Delicious Clutter” and less “Hoarders: Buried Alive.”

More on this later, perhaps, and possibly with Pinterest links.

Drama: Do not want.

21 Dec

I am losing my mind with this OT nonsense.  Here it is supposed to be the holidays, but I don’t get a holiday from fighting with the OT about my daughter.  Today she hung up on me.  Nice, right?  She hung up on me because I didn’t want to meet with her and her supervisor until we’d had a chance to discuss the whole thing with Lily’s pediatrician.  

What’s the rush, right?

The rush is that the OT is going on maternity leave and they don’t have anyone to cover her cases, so naturally the best thing to do is to declare that Chaos Peanut has met their goals and discharge her, never mind that the child wakes up screaming in the middle of the night because she has a cold and there is snot on her face.

And when we raised some of these concerns and suggested that Chaos should have new goals, they told us that all of Chaos’ issues are now behavioral and none of them are sensory.  It’s magic, boys and girls!  It’s a Christmas miracle!  Chaos is cured of sensory issues! ABA is the answer now, all we need to do is REWARD Chaos for NOT screaming because of the snot on her face and she won’t do it anymore.  Turns out we weren’t setting up enough of a behavior plan that would teach Chaos not to have sensory issues!

And yet she has simultaneously developed all these behavioral issues around the fact that she has sensory issues that aren’t being addressed because the OT has decided to discharge her for the convenience of their schedules.

I mean, discharge her.  Go ahead and do it if that’s what you’re doing!  But we don’t have to say, “OK that’s fine, that sounds good” if it is NOT fine and it sounds BAD.  I mean, you can discharge her.  We can’t force you to treat her.  But you can’t force US to agree with your bad plan either.  

So today they magically decided that we had agreed to a meeting on Monday that we never agreed to, and when the Bishop said, “Uh, we never agreed to a meeting,” the OT called me to tell me that we “had to” meet because  her supervisor was coming in special.  I said, “Well, tell her not to!”  This went on like this for a while and then she hung up on me.  

Then I got mad so I do what I do when I got mad which is I started to cry and that’s pretty much where I left it.  

I do not want drama.  I just want to sit in my filthy home and have peace.  Is that too much to ask?

OK, I need to go put away the groceries before I go and get the kids from daycare.  If any of you figures out the source of that odd smell, could you let me know?  Thank you, and Merry Christmas.

A plague on my house!

20 Dec

The world is supposed to end on Friday and of course we are rational and we don’t believe that, right?  Right?

But isn’t there part of you, just the tiniest part, a part that you’re not so proud of, that will just feel a little better on Saturday, when Friday has come and gone and the world hasn’t ended?

Oh, sure, I get that the world is ending all around us, but I’m hoping to avoid an immediate cataclysm.  You know me… I’m hoping to avoid DRAMA.  At least, big drama.  At least, big drama on FRIDAY.

We’ve had enough cataclysm around here, that’s for sure, and for the record, my house is a mess.  Plagues!  First, Chaos Peanut had dental surgery.  She needed a lot of dental work.  It turns out, eating solids hardens the enamel on your teeth, so when you devote your life to eating bisque, well, you’d be better off eating peanut brittle.  At least as far as your teeth are concerned.  Speaking of brittle, that’s what Chaos Peanut’s teeth are.

So she needed to have a bunch pulled, some fillings, some crowns, even some baby root canals.  The whole thing was done in the O.R. under general anesthesia and it was just…. yeah.

When Chaos came home that day she was sad and mad and upset and tired.  And then right when she started to adjust, she got a sniffle, and you know how she does with those.  And once that went away, she promptly got lice (lice!  A plague!) and those may or may not be gone but now she’s got a cold again.  Poor Chaos.  Poor sad Chaos.  She was so sad last night and she woke up at 4:30 this morning and she fell back to sleep finally at 6:50 and when she woke up again at 7:30 this morning she was sad, sad sad and she was howling and lying on the couch and looking so unhappy that we kept her home from school and forced her to have some Motrin, which she usually takes with mild coersion and bribes but this time we had to hold her down.  I hate that.

After a few hours, she was more herself (the Bishop reports, I was at work.) and he shipped her off to her much loved after-school program at about 3:00 so he could finish his work.  She was happier when I picked her up and had a calmer and happier evening so we felt justified in keeping her home because whatever is going on with her, and really whatever ISN’T going on with her?  Maybe she just needed a DAY OFF.  So, she had one.

Tonight I put her to bed and I rested my head on her bed while I croaked out a lullaby (I have a cold too, natch) and I watched Chaos sleeping so peacefully and I said the same wordless prayer I say every night to the cold and probably empty heavens, and if I were to put words to it, it would probably go something like… “Please G-d, help me learn to make her happy.”

These are my choices?

19 Dec

In the movie, “Postcards from the Edge,” Shirley MacLaine is talking about how she’s a bad mother.  She says, “I was such an awful mother… what if you had a mother like Joan Crawford or Lana Turner?”

And the daughter, Meryl Streep says, “these are the options? You, Joan or Lana?”

So, rough couple of days.  I’m frantically channel surfing to avoid the images of tiny coffins containing the bodies of murdered six-year-olds.  And I’m so grateful, so profoundly grateful for my little Chaos.

Chaos has a cold.  Well, we all have colds, but Baby, he has so many colds that I think he actually has a viral queue, and the next cold will wait politely until the current cold has passed, we’ll have about a day where we can enjoy Baby Peanut without getting covered in snot from his widdle nose, and then the next cold comes in.  I’m not even kidding.  It doesn’t bother him much… he’s such a pleasant, agreeable little fellow that he just takes  most of it in stride and keeps on chortling.  “Dog!”  he shouts.  “Duck!”  “Window!”  “I want dat!”

And can I just say, I used to wonder how parents of neurotypical kids got their kids to do things like talk and eat solids.  It turns out that most kids JUST DO IT ON THEIR OWN and the parents really don’t have to do much other than keep them from choking to death. Neurotypical kids practically raise themselves.  At least, that’s how it feels to me.  Don’t disillusion me.

So when I say we all have colds, assume that Baby has a cold.  Also if I say we’re all healthy, assume that also means that Baby has a cold.  I have a cold and the Bishop has a cold, and Chaos Peanut has a cold.

Chaos Peanut does not take viral infractions in stride.  Her stuffed nose causes sensory meltdown, she screams for “napkins” when she can organize herself enough to access language at all.  And when she’s not screaming, she’s off in la-la land and you can’t talk to her at all.  Really.

“Chaos are you hungry?  Do  you want to eat?”

“…”

So I touch her hand, get up in her face, search for eye contact.  “Chaos, do you want to eat?”

Chaos turns her head away and begins humming the theme from “Super Why.”

And so on.

She can be like that normally, but not quite as aggressively so.  Tonight, Chaos ate two bowls of pureed macaroni and cheese and then lay down on the couch.  We don’t let her fall asleep on the couch, because if she does, she’ll be up all night when we put her to bed.  When the Bishop caught her drifting off, he said, “Do you want to go to bed, Chaos?”

Her response was to start the most awful sound that I usually describe as howling.  Basically, Chaos has used the considerable power of her mind to come up with the single most horrible sound that she could make.  It is the kind of sound that a parent would do anything to avoid.  Think the screams of a child in horrible pain, only ten times louder.  The kind of sound that makes strangers call the police first and ask questions second.  That’s Choas Peanut’s howl.

“So put her to bed,” I said to Bishop, and he coaxed Chaos back to her bedroom.  She howled the whole way.  He helped her change into PJs (she howled) and tried to convince her to take some Motrin (howls) and then I finished putting Baby Peanut to bed and I came in (howls) and we coaxed Chaos over to the toilet, which she used, while howling, and I convinced her to wash her hands, more howling, and then we tried to get her to take some Motrin again but she howled so much that we put her to bed.  No doubt she will be up at 3 a.m. and howling and will not be able to access any language in order to tell us what’s wrong, not that we could necessarily fix it, but maybe she would feel better for having told us.   You know, maybe I could comfort her, if I could only get her to stop howling first.

She gets OT outside school and the OT wants to discharge her because she has “met her goals.”  Sure, I mean, if you set the bar low enough, I guess you could say Chaos has met her goals.  Bishop and I made the point that Chaos should have NEW goals, not be discharged from OT, and they are STILL trying to discharge us.  They had some nonsense about how she could be reevaluated in six months, which you and I both know means a full year without services because it would be six months after that before we could get a spot on the schedule.  I can’t figure out why they won’t just make new goals.  It’s incredibly frustrating to us, because the child we see, a child who is so upset about a common cold that she sits there and screams and can not access her language, settle herself down or regulate herself enough to stop crying… that is a child who needs OT.  She needs something.

I need something.

Parasites on my daughter

9 Dec

So we got the phone call from school I’ve been dreading, telling us that Chaos Peanut has lice.

I’ll give you a second to go and frantically scratch your head.  You don’t have them, most likely.

But Chaos Peanut did/does.  I know every parent dreads this, but me more than most because of Chaos Peanut’s sensory issues.  Chaos Peanut would barely let me brush her hair. I figured if she ever got lice I’d have to shave her head.

However, she’s got this great aide in her classroom who just loves to do her hair.  Part of it is a sensory activity and part of it is, I think, that they don’t get a lot of girls in autism programs so Chaos gets to be the little princess.  And I am not so good with Chaos’ hair, plus we’re always rushed in the mornings, I mean, REALLY rushed, like rushed even for rushed people, and sometimes I don’t even have time to brush it if she even lets me.  But she was letting me brush it more and more, and even put it in ponytails or pigtails.  And that’s all thanks to the aide at her school.  Certainly not to me… I’d rather give up than fight most battles.  I say things like, “we don’t really need to brush her teeth, Bishop, she hates it so much!”  I’d rather have peace than challenge my strong willed girl, and I’m not really proud of that.

But the call about the lice, that just sucked.  My sister recommended some natural stuff that’s supposed to kill the lice and their eggs, so I got something similar to what she recommended and I put it on Chaos’ head and she screamed and cried and howled as I was putting it on (but she let me comb it out!  Go figure!) and then we washed it out and…

It didn’t work.

So OK, fine, it didn’t work.  We got a note home from school telling us in great detail how many live lice they’d found on her head (retch) along with suggestions that basically came down to POISON.  POISON THE F OUT OF THEM AND THEN POISON MORE AND THEN COMB AND THEN MORE POISON KTHNKSBYE.  They don’t have a no-lice policy at her school so I didn’t have to keep her home or anything, but the daycare she goes after school DOES have a policy and also, ew.

So on day two of the Lice Fun, I got some POISON and I put POISON all over her head and this time I WASN’T KIDDING AROUND.  I put Chaos in the bath and I COATED her head with that poison like it was hair dye.

(In an aside, I know kind of a lot about hair dye because back in the early 90’s I worked for Clairol in New York and I used to dye all my friends hair.)

So I just treated the poison like dye and I did a root application of it and I killed those lice DEAD but DEAD.  Really they were DEAD.  I don’t even think the Bishop felt guilty about it.

It was a shock that first night when Chaos let me comb, but she did.  I coated her hair with special lice repelling conditioner and comb it with a big comb for tangles, and then I get into the roots.  Chaos will let me comb, but not for too long, so I combed her as best I could and I pulled some nasties out of her hair.  It was really gross but after a while, sort of satisfying too.  But Chaos will only allow so much combing before she is DONE WITH THAT and ready to move on to other things and I don’t want to push her because I don’t want her to dread the combing and start fighting it.

I had the school nurse check her the next day and the school nurse said there were some nits left but they were DEAD and DEAD but that I should comb her again which I was going to do anyway.  Today was her birthday, but she didn’t escape a soaking with vinegar and water, a shampoo (finally!) and another comb-out.  And I’ll comb it out again tomorrow.

And I’m sure we’ll have to do the whole thing again when the lice come back, because I’m told they usually come back and it can take several tries to get rid of them.

And each time you have to wash all of Chaos’ bedding, plus her bear (which is washable, thank heavens) and her pillow and vacuum the couch and her stuffed animals, and it’s just a big huge PAIN and just a whole lot of laundry and the clean stuff is still in a pile on my bed and if you think I’m going to sort it NOW, you’re delusional, as I’m going to shove it back into the bag so I can lie down!  And that’s all I have to say about that.  Lice!  On my little Chaos Peanut!

Except this.  Tonight we were at a Hanukkah party and the Bishop calls me over to him.  “Does Baby have dandruff?” he asks.

“NO!” I said, and I came rushing over. But what was in Baby’s hair, really DID look like dandruff.  It was big and flaky and didn’t really look much like nits.  And it slid out of his hair easily.  But it seemed awfully coincidental, doesn’t it? Chaos gets lice, then baby gets “dandruff?”

But then I noticed it looked like food.

Like baby cereal.

Like the powdery flaky baby rice cereal Chaos has taken to dumping into her food in great dusty quantities.  That stuff gets everywhere.  Everywhere!  And baby WAS crawling around on the floor right below where Chaos was sitting.  So yeah.  Phew.

Not lice.  Rice.  Rice!

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