Not Sleeping Well

"...by studying videos of children taken a year apart, observers blinded to a child's diagnosis and regression history found evidence that infants who were later diagnosed with autism spectrum disorders with regression appeared to have similar interpersonal skills and advanced communication abilities compared with typical kids at 12 months of age, only to lose those abilities by 24 months."

More:

http://www.medpagetoday.com/Pediatrics/Autism/tb/1463
http://www.medscape.com/viewarticle/512353

Piercing

Iz got her ears pierced last night. She asked Seymour and me about it the night before, we said sure she could, and so after a provisions run we then scoped the local tattoo/piercing/head/altwear shop to see if they could accommodate her.

Not only were they totally cool and nice and professional, but we were in and out in less than ten minutes. She was brave and steadfast.

She couldn't wait to get home so she could phone her grandparents with the news. Which she did thusly:

"Grandma! It's Izzy! Guess what I got pierced!"

Request:

You know what improves my mood? Music. Except I've no time to search out new stuff. Ideally a mix from Skip would magically appear in my mailbox, but until then perhaps y'all could recommend some downloadable mood lifters? Sal0n had a great one the other day but I couldn't figure out how to get it onto my Nan0.

Storm Clouds

Things have been far too stressful for far too long and I don't know what to do about it. Recent events with a friend and her partner have left me worried that I don't know how to get my partner a break so that he doesn't crack. One of us has to remain hinged. Yet we've less than two weeks in which to do all that needs to be done for the holidays--on top of taming our usual chaos--before we go to Seattle. Once we get there the stress-o-meter will stay at eleven for eight days straight.

How stressful are things? Stressful enough that I screamed at my six year old daughter last night, to shut up and stop whining. Result? She spent this afternoon on her best behavior, doing everything I asked in a timely fashion. Not because that is her natural inclination, but rather because I scared the shit out of her and now she's afraid of making me angry. That's some fine parenting, hooo dawgie. Give me a medal!

Every night as I go to sleep, I tell myself that at least the next day will be better. Who the fuck am I kidding? Here is my today, and it is not atypical:

• -Therapist L calls to cancel for today (morning: therapy at home, afternoon: Iron Gate aide) as she had a medical emergency.
• -Exit house at 7:30 to take Leelo to Occupational Therapy in Deadwood Shores
• -Slip on ice-slick exterior wood stairs, fall flat on back and see former sleeping babe-in-arms hit cold hard stair. Thankfully she only rolled off my shoulder, but that is sure as hell not how she would choose to wake up.
• -Go inside, check out baby, calm down baby
• -Re-exit house, gingerly
• -Walk by our only piece of nice luggage, which is airing in front of the garage as Scabby pissed on it.
• -Call Pediatrician on way to OT as Mali has been sick for four weeks now, and things have become crusty (eyes and nose). Also cough is really chesty and looks like it hurts. Leave message.
• -Arrive 7 minutes late for OT. Which costs $2/minute.
• -Go to Satan's Coffee, congratulating myself for at least remembering to bring my own cup. Too bad I brought the wrong lid. Exit store bearing paper cup.
  
• -Pick up Leelo, who had a tolerable session with some good coloring and scissor work. Yay Leelo!
• -Run errands on way home. Advice nurse calls while I am in check out line. I try to move to the side so as to delay checking out but clerk pointedly starts scanning my items while I am on phone talking about my very sick baby while also Mali whines on my hip and Leelo tries to escape my hold on his wrist. Mali needs to come in and see a doctor.
• -Dash home. Frantically prepare Leelo's and Mali's backpacks for Iron Gate. Spaz over preparing snack for Iron Gate kids and parents.
• -Team meeting at home, with Supervisor M, Therapist S, and (yay!) Sage. Good but long discussion. Leelo has been having a shitty three weeks since we returned from Phoenix, and we are concentrating on removing stressors from his environment. However he is not losing any skills, not regressing. No point in adding anything new to program as we're traveling again, soon.
• -Leelo drops glass cup on tile floor, mid-meeting. It shatters all around his feet and he cuts his finger, which I do not notice until Supervisor M points it out--Mother of the Year! Cut is small and stops bleeding quickly, which is good as Leelo will not tolerate band aids.
• -Supervisor M brings a selection of books for kids about autism and suggests that most are insufficient and that I should write a better one. YEAH. Maybe in 2010.
• -Run Leelo and Mali to Iron Gate. Saintly Supervisor M takes over first part of Therapist L's shift with Leelo.
• -Arrive in Iron Gate kitchen. Realize that previous kitcheneer declined to put away clean dishes from dish rack and dishwasher. Nark on said person to Iron Gate president. Feel smaller blood vessels popping inside cranium, as working Kitchen/snack is stressful enough without even the slightest additional demands.
• -Sage arrives to say hi and puts away all the dishes! Goddess!
• -Realize after prepping snack and giving several people breaks that snack time has not been called and it is getting late.
• -Leelo is handed to me by Supervisor M as she needs to leave to pick up her own kids (saint!). Hip-load Leelo as I finish up a teaching lesson. Leelo then helps me wheel the snack cart down to snack area.
• -Children are snarling little demons, wrestling over banana muffins and deserving to have tiny horns branded on the sides of their foreheads. I resolve to never have children.
• -Leelo, now free-range, dashes through my field of vision from time to time.
• -Snack ends late late late. I sprint back to the kitchen to start cleaning up, as I'd intended to clean up early so as to be Leelo's bedrock during circle time (he cannot attend unaided).
• -Saintly JL comes on Teacher P's orders to take over clean up so I can help Leelo.
• -I help Leelo for five minutes (he does so well!) but then Mali starts howling from the nursery and I'm told to take her, too.
• -The shift from hell finally ends
• -As I am dropping of Sage's Ki (Leelo's carpooly classmate) at home I remember that I never retrieved the snack tray from the nursery (where Mali and all the micro-Gaters are penned while their parents toil). Go me!
• -Retrieve Iz from Badger's popcorn-and-cranberry string fest. Am so implosive that I yell at Iz again--in front of everyone--this time for forgetting her coat at school. Make no eye contact with anyone (more on that later) and leave quickly.
• -Come home to find ants invading entire home, specifically kitchen. Sweep them all outside and leave more deadly forms of warfare to Seymour.
• -Seymour calls at time he usually arrives home to tell me that he's just leaving his office 30 minutes away.
• -Realize that that same body of mine that took a pratfall on the stairs this A.M. is now very sore.
• -Finally remember to call back Pediatrician to make appointment for Mali. However the office is closed for the day.
• -Mali takes forever to go to sleep.
• -And here I am.
  

I must say that I love my friends dearly, but that I simply cannot tolerate being around them right now. And yes these would be the same friends who picked up Iz from school this afternoon (Jo), hosted her all afternoon (Badger), and had her over to play all day on Saturday (Ep). I am having a hard time articulating why but it's mostly rooted in jealousy over their large slots of child-free time, so I'll just trust that you can understand and avoid me for now.

Encoded

I am not always the very worst mom in the entire world. Granted, my baby hasn't had her nails trimmed in several weeks, I just realized that my son hasn't been taking his calcium supplements for oh, a YEAR now, and my husband had to pick up tooth fairy slack this past week when I spaced not only on Iz's first front tooth-losing and all related subterfuge and follow-up, but on the second as well (the second is more understandable as she swallowed it).

But I don't always entirely suck. Witness the below: a code with which to track down all the clues in her advent box. (A code which does suck as I whipped out in five minutes, but as she's six she doesn't care.) I wrote it out the evening of Dec. 1st after she started wondering why Santa hadn't put out her advent box yet. Said box has a wee giftie drawer for each of the twenty-four days leading up to Christmas. The next morning she found this key, a clue, and had herself a short hunt leading to her very own egg separator.

I think it would be very funny if people were to write her short letters in her code. It would lend weight to my line that Santa created it, not me, and that he's distributed it to certain types of parents (i.e., that slim cross section containing both cool cats and Santaphiles). Let me know if you need her snail mail address.

Two Teef

Iz has lost both front teeth. The timing is good--she was very excited to ask for them back on her letter to Santa (in whom she still believes, believe it or don't).

Our poor girl has a lot of big teeth in a small jaw. We have taken to calling her "Flukie" behind her back:

Traveling Blues

Two nights ago Seymour and I were watching the Tour de Faso (Burkina Faso, that is; we have been there) and I was getting depressed because it's been far too long since we've been to Africa, and it will be far too long again until we get to go anywhere that isn't special needs family friendly.

(Aside: I am only going to write this once more and then never bring it up again, though I might put it on the about page: Yes, only a privileged sort can whine about missing trips to Africa. I should and do count my blessings. That doesn't mean I can't complain about things in my life that are not going as expected. Fuck off.)

Last night I was chatting about my traveling blues with Armada, Violet's mom (who was just in Zamb1a for three weeks, sometimes I HATE HER but only out of pure green envy) because she of all people understands the need to see what other parts of the world are like. She mentioned that some of her friends were going to the Dog0n region of Mali in the near future. I mentioned that a friend of mine is a guide there. I contacted him to see how he's doing, and to ask if he could help her friends out, and...check it out! He's got his own web site. How cool is that.

Birthday Baby



White cake was really very effective in terms of making her face- and hand-wiping needs appear less imperative. Also I didn't feel like dealing with food coloring. Iz, Violet, and I made the cake and icing from scratch--because if I say "I'm going to teach you how to make a cake," then that cake is sure as fuck not coming from a box--but I couldn't summon up the energy to push additional decorative boundaries. Pink icing sugar over a cut out and then peeled off "1" was what happened. And it was fine.

Comic Interlude

I am so sad over my friend's sadness. How could this be her current reality?

To distract, an Iz conversation from two days ago:

Iz: "So, first you got your tubes tied, and then you and Daddy stopped having sexual intercourse to be totally sure you wouldn't have any more babies?"

Me: "Well, Iz, that is a private matter, so I am sorry but I am not going to answer your question."

She seemed to get it, I think. In the mean time, beware anyone to whom she puts her "Do you feel comfortable talking about reproduction?" query.

------

Also, she lost her first front tooth on Mali's birthday. The other one is hanging by a thread, and she looks entirely snaggletoothed.

Last night we saw HP4, and I would like to offer a rousing "FUCK OFF" to people who go to kids' movies and then look askance at the children in attendance who are so excited that they can't always remember to whisper. I cried when Harry brought his friend's body back to the stadium, Iz did not. Ep says Iz's empathy chip will click on in two months when she turns seven.

Mali's birthday was good fun. She mushed all sorts of cake in her face, though not so much in her hair. A mellow party with good friends. Badger brought an octopus-shaped massager (stop snickering, fans of naughty anime) and it was the hit of the party.

Today I took the wee bit to the MYND Institute for her 12 month checkup. They couldn't stop remarking on how cute she was, how analytical and methodical, how advanced she was in some ways, how friendly, how easy-going yet focused.

I am worried that the intense focusing tends to interfere with her responding properly to her name, but that is of course my extreme paranoia poking through.

Right as they were trying to get me to see if she could walk, she took five steps towards me, the most ever yet. The evaluator was thrilled to catch it on camera. Also she is over 20 lbs so I think it's time for a big girl car seat, facing forward.

Many thanks to Seymour, who played the part of Me all day today and who even worked my Iron Gate shift. Also Jo for picking up Iz. And kudos to the Iron Gate moms who loaned Seymour a car seat to get Sage's Kiki home from Iron Gate, because I fucked up and forgot to write that entry on his schedule. D'OH! That'll teach me to assume I've got my own schedule memorized. Repeat: Must Check Calendar Every Night.

Bye Bye Baby

This is Mali's official last day as a baby. Tomorrow she will be one. How the fuck is that possible?

She is celebrating by taking the first nap in our bed (her bed too) in recent memory. Consolidating naps, she is. Oh well, it's not as though she's ever napped in a manner that was in any way useful to me, so she might as well cut down.

Also last night she took her first step, or "stagger" as witness Ep would say.

After we got home from a very fun though completely draining Thxgiving at JP's house and were greeted by the cats, I said, "Hey, Mali, say 'meow' to the kitty."

"MEOW!!!!" yelled Mali. So she's sentient after all.

A lot of kids later diagnosed with autism are happy bright and chatty up until age 14 or 15 months, but I have to say I am feeling optimistic. She is a very different baby than Leelo was at the same age.

Short Bus!

Both MB and Sage told me something yesterday I'd not even considered. If your child qualifies for special ed district services through the city or county, then that district will send a bus to come get your child for their classes. Woo! How cool is that?

Short discussion with the sorely missed MB about how this was the year we thought we'd be prepping our kids for mainstreaming in kindergarten, and how...well, let's just say that we're considering all options. And that we're grateful for environments in which our kids aren't the outliers.

Also it was just good to hear from my friend. Although every time I talk to her I must admit that I'm forcibly reacquainted with the spectrum quality of our kids' identical diagnoses. She was telling me how her Sophie loves her Laepster. The only time Leelo has even noticed Iz's is to chew on its stylus. Different kids.

I was also telling her how Seymour and I are starting to wonder if Leelo doesn't have straight ahead autism, but rather a combo of severe ADHD, Tourette's, and slight OCD. But that is really me talking out of my ass. His social and communicative impairments are pronounced. He probably just has all that other shit, too.

Yesterday was one of the worst Leelo days ever. He was so off, so jitterbuggy, so lost that he couldn't even remember to pull his pants up after going potty. I watched him toodle around the house for a good five minutes with his pants around his ankles, even though I'd reminded him to pull them up. Normally he takes care of such things on his own, without prompting.

I am going to write and drop off Leelo's Deadwood school district intake letter today, damn it.