Mali just demonstrated that she knows well over half the letters of the alphabet, with confident articulation. She gets confused between lookalikes like R and A, and some letters are given unique pronunciations (W is "doy-doyee") but...huh. I thought she only knew A, B, and O. Clever baby.
After more rumination, I realized this post is not really about Mali's letter recognition--Iz had the alphabet down at 14 months and could sing the alphabet song at 20. No. It's about the blocks Mali used to show me what she knew. I got them for Leelo right around the time Seymour and I were in active denial about our boy's symptoms. I tried for months to get Leelo to play with those blocks, and he just didn't give a hoot.
Mali loves them.
The girls and I are off to the PNW for a few days. Back 4/5. Think warm thoughts for all my super-stressed friends while I'm gone, and well thoughts for Mali who has been up all night the last three nights with a a fever (which disappears during the day) and a sore throat. We saw the doctor yesterday and as the baby's ears are totally clear (not even fluid), she's approved for travel. This trip should be interesting.
TweetMali at Sixteen Months
I forgot to mention that Mali turned 16 months old two days ago. I also realized that we've almost no printed photos of our youngest in which she is more than five months old, so my photographer friend JM came over yesterday to remedy the situation. Help me pick a shot from the ones below! There were actually 50 shots; anyone who wants to see the entire session's results can email me.
Let's not forget that Pat the Cat was there as well. And was feeling rather smug about his successful campaign to incapacitate Grace D.
Another thing Mali does that leelo doesn't yet do: She will come up and alert me that she's been marinating for too long, with a plaintive "Poo poo! Poo poo!"
She also divides the rest of her inside time between demanding, "Outside? Outside? Outsiiiiide?" and, "Chair? Chaaaaair?" (Meaning sit down in that rocker and give me your boobs, now!).
Leelo is having the shittiest period, behaviorally. He's hitting all the time, even at school. He's only been there five days total, and I hate that this is their introduction to him. He is usually such a sweetheart. Last night he and I had a great time copying each other's silly faces, giggling all the while. But I think he was able to engage with me that long only because it was almost bed time and he was tired.
We talked about his restlessness (he can no longer sit still even for two minutes of a favorite video unless he's exhausted) and unpredictable behavior at the team meeting yesterday. We are working on calmness, predictability, and addressing his currently significant sensory needs through deep pressure and massage, and lots of exercise.
Supervisor M also mentioned that she had showed a video of Leelo working with Therapist L and doing NLP (Natural Language Paradigm) to a class. Leelo was apparently quite the performing monkey in the video, because the students' reactions were basically, "But what about the lower functioning children? How can we use NLP to help them?"
I said that is was funny that Leelo is considered "high functioning" as he was put in the lower functioning of the two preschool classes at ALSO. Supervisor M reiterated that he was placed there because of his behaviors and restlessness, and that these are the characteristics that will make it more difficult for him to succeed in general (and let's get a meds consult already). She reminded me that in all other area's he's doing really well. He is starting to read, and his self care is pretty good. He still has trouble with longer sequences, but that too is probably related to the restlessness and inability to focus.
I do wonder if some of his behavior is rooted in the pain from the plantar wart that is not going away despite two months of home treatments. This morning we saw his doctor to consult about the wart's tenaciousness, and the doctor decided to try to freeze it off. Holding Leelo still during that process was, erm, an effort. I am grateful that the scratches weren't deep and that he let go of my hair eventually.
I also got to ask the doctor about our status re: her getting us a meds referral for the MYND Institute. She apparently did not understand that even though she had already called MYND and asked for the referral, and even though she'd been told by her organization that they could not authorize the referral and that I needed to contact my insurance's mental health services directly, which I then did, that the insurance people were wrong when they told me that I was authorized to call MYND directly, because when I did the MYND folks told me that I had to get Leelo's doctor to call them directly not for insurance but for records and consulting purposes. I ask you, how could she not instantly get that? She's on it now, though.
Because this is all so random, I will leave you with my Uncle's image of a moose walking by his house in central BC.
TweetMore House Design Hurdles
Be warned: deadly dullness ahead.
At the moment, there are two main obstacles to our future house as designed.
The first is that the theoretical house touches what we were initally told was an easement (against which one can build) and which, after designing the house, were told was actually a property line (within ten feet of which one cannot build).
To deal with this we are in the process of relocating that non-easement--actually a walkpath--along a route where it will still serve the purpose of letting anyone who wants to walk across our yard. Which no one has ever done. This is the process that requires ten neighbors' signatures. I've got nine, and am hoping that the usually unresponsive, occasionally dickheaded neighbors behind us will be #10. Though it's been a week since I left them the relevant voice mail.
The second issue is that we can't find a place to put the carport. It needs to be in a sunny spot because we want to put the photovoltaic array that will free us from the electric grid on its roof. The ideal placement is over a sewer line--but then, that's not ideal, is it? Here's the email I had to write to the architects after speaking with a very reasonable Public Works person:
Hi,The architects would like us to do #3, which means building over the pipe. What I did not include in the above letter is my and AS's agreement that, amazing and wonderful as our architects are (and they really, truly are), they would not have to live with the consequences of the decision.
I just had a conversation with AS at Public Works regarding putting the carport over the sewer line. They are very much recommending against it, and have mailed us a memo to this effect.
Their reasoning is that even without a catastrophic sewer line-destroying event, they still need to access the line for routine maintenance. Routine maintenance includes line replacement.
She said that our options are:
1) Move carport location
2) Relocate the sewer line itself (I smell major delays...)
3) Assume responsibility for maintenance of the pipe. She stressed that this is a very serious gamble.
AS is still lobbying for #1, but all three are possibilities. I must admit that, as one of the main purposes of this project is to simplify our lives once everything's complete, I am still hoping we can find some magical carport relocation solution.
TweetLeelo Good and Bad, Plus Woolfcamplet
Leelo didn't have the greatest weekend. He had lots of flailing outbursts and fits, often out of the blue. I think he smacked every single person responsible for his care both today and yesterday. Last night he went absolutely insane in the bath, repeatedly and almost hysterically trying to climb the tub walls, slipping and falling down again each time. He could easily have knocked himself out, injured himself, broken his jaw. I found his behavior truly disturbing, feelings which were themselves disturbing. No parent wants to feel scared of or about a child.
I got him out of the tub as soon as I could, but course Mali (who had been peacefully playing on the bathroom floor) started screaming when he did, which made Leelo even more agitated.
I am grateful that Iz kept it together amidst the bath chaos, even after Leelo hit her several times during their bath together (pre-wall climbing fits), and before she could escape. However else that girl drives me around the bend, she is an absolute wonder when it comes to being patient with her brother, or the unruly behavior of anyone else she loves. I am working with her on not submerging her feelings about being ill-treated, and on making sure she stands up for herself. Even with people like Leelo who have difficulty reining in their impulses.
Leelo was at his worst and most unreachably spazzy post-Woolfcamplet (when I was solo), which yet again reminds me that rowdy parties at our house in which I am mostly preoccupied can seriously fuck with Leelo's temperamental stability. We will need to keep things calmer or at least smaller until we build the new house with its own separate spaces.
I am consoling myself with the knowledge that Leelo is so frequently, vocally, and visibly happy to see me. He gives me hugs, kisses, great eye contact, and smiles. He returns my smiles, when he's in a receptive mood. I will try to get him to smile and engage as much as I can. These are some of his most wonderful traits, and I will cling to them when I'm desperately craving optimism.
Woolfcamplet itself was groovy! I didn't blog or take pictures (other people blogged and took pictures), but had a fantastic time, especially with Jenijen and her partner (code name?)--so very much our kind of people! I can't wait until Seymour gets to meet them. Their youngest boy and Iz spent the afternoon in blissed out co-geekitude, rarely leaving each others' sides. Check out this lovely image (taken by Jenijen's partner) of the two hiking together.
I was also absolutely thrilled that so many cool people came--Badger, Emily, Elkit, Ep(!), Grace, Jenijen + Partner, Jo, and Mary. Thanks for participating, for bringing such great energy into our house, and for leaving behind so much good undrunk wine and champagne.
Seymour arrived home from New Mexico late last night--after the camp, after the bath incident--and found me completely crashed out on the couch. I had wanted to give him a better greeting than that, but alas.
It is set to rain all day tomorrow. During our "We Love Jo Spanglemonkey" Woolfcamplet. Which is going to be at my house. Which is about the size of your smaller thumb.
My three kids will be here along with a smattering of similar creatures. If it really does rain all day, then we'll need to get extremely creative with our space usage. The only thing I can think of right now is that any actual "sessions" can take place in my room, and the kids can run amok upstairs. If we campers want to go upstairs to eat/breathe/drink, then we'll be part of the fray. My room smells musty from some as-yet-undetermined source, but you can just chalk that up to our house's rustic charm.
Shoehorning everyone into the house should be fine, really. We'll have lots of champagne and wine, and I might even get wacky and mix some cocktails.
I will ask that people please stay out of Mali's room/my office, however. I was going to open it up as an additional space, but just an hour ago Leelo did a stealthy and thorough trashing of the room--complete with breaking my desk's keyboard tray--while I was upstairs nursing Mali to sleep. Silly me, I thought they boy'd actually gone to sleep upon being put in bed, as he strangely did during the past two nights.
TweetKeep Your Distance
One of the complications of having my partner go a-conferencing for several days is figuring out how to sneak in a shower. Normally Seymour and I trade off showering sessions in the morning: one of us starts the morning child-herding routine while the other gets squeaky clean, then we switch.
I have to be creative when solo parenting. I can't wake early and try to shower before the kids start stirring--Leelo's rising time is too unpredictable. What I have been doing is postponing the shower until after Iz is already dropped off at school (I don't have to get out of the car) and Leelo is safely in the care of his morning therapist. Mali is happy to play on the bathroom floor while I do what I need to do.
Except this morning Therapist L called and cancelled. So, no help with Leelo, no Mali-and-Mommy shower time. I will be a stinky girl today.
Maybe I will take a shower tonight after the kids go to sleep--even though I hate showering at night--so that tomorrow's Woolfcampleteers will be able to come within five feet of me.
P.S. Yes, locals, I am totally fishing. But I will be okay either way.
TweetThe Proudest Mother in Town
Today was Iz's parent-teacher conference. It went the way these conferences usually go: our girl is bright and does good work when she's interested and crappy work when she's not. Shock.
The "not interested" apparently affected her standardized testing as well--the teacher showed me pages where Iz obviously didn't feel like reading the questions closely and so got them wrong even though the teacher knew that Iz knew the correct answer. Iz also (snicker) frequently decided that she didn't like the available answers and so wrote down some of her own--complete with illustrations.
The teacher didn't really have any way to gauge Iz's true reading abilities. Our girl's at least 4th grade in Spanish. In English the resources only test through third grade, and Iz blew the roof off of those measures.
But, yeah, whatever. We all know that Iz is a smarty pants and likes to fuck with or cirucumvent authority.
What made me proud to the point of tears is an Iz essay the teacher handed me at the end of the conference (image below). It is Iz's own take on MLK Jr's "I Have a Dream" speech. She didn't wish for a pony or her own Queen Bee book. No. From the bottom of her heart, she wished that gay marriage was legal. *Sob*
My kid has a social conscience. My god. I'll take that over top marks any day.
TweetMali on Fire
I have been trying to write this post for four weeks now. During that time Mali has gone from lurchy tottering to confident ass hauling. She has gone from not saying my name for a spurt and making me freak out about language loss, to saying "Hi Mama!" incessantly any time I'm even partially in her field of view.
She is a funny looking but absolutely charming, adorable baby. We are so lucky, so blessed.
Here's the mishmashed post regarding the last month's Mali-ness. If you're not interested in reading overly detailed fawning about toddler development, then I suggest you exit now, as there will be extensive documentation of Miss Mali's incredibleness--mostly because I am not taking one whit of it for granted, so it is doubly amazing to me.
So this is what it's like to have a typical kid. I had totally forgotten how much and how quickly they learn. Mali is gaining on Leelo in many things, and has surpassed him in not a few. She already plays with Iz more than Leelo does.
Things fifteen-month-old Mali already does spontaneously that five-year-old Leelo won't do at all, or without a whole lot of prompting:
- Turn to people when asked,"Where's So-and-so?," and say, "Hi, So-and-so!" with great eye contact and enthusiastic waving.
- Constantly comment about her environment. Although for the moment this commenting manifests in joyful greetings rather than mere labels: Hi bus, Hi car, Hi Kitty, Hi tree, Hi [Name of person]. (She is starting to say her siblings' names, too)
- Point at objects of interest. For instance--and with a frown--Leelo after he's just toppled her.
- React to a puppet as though it's a living being, with hugs and kisses and conversation.
- Imitate from observation: Yesterday after she saw me watering plants with a watering can, she found a kiddie watering can and went around pretending to water the same plants.
- Pretend play. She makes her baby doll wave hi, too.
- Nod yes and shake head no.
- Use "no" as a general negation, rather than as a situation-specific one.
- Repeat actions that make other people laugh (e.g., holding onto the side of the tub and splashing the water with her bottom).
- Demand that people read books to her, and repeat out loud the parts she knows
- Say "all done" when books or meals are finished
- Give clingy, heartfelt hugs and kisses.
- Demand to be with other people rather than play by herself.
- Bite off pieces of food rather than tearing food into bits and then eating pieces.
It is wonderful to see her on what looks like a very typical developmental trajectory--but the contrast with her brother truly spotlights his delays, and makes it harder to tell ourselves that he's doing well. Even though he is, by his terms.
Leelo's new Teacher W asked us about what foods our boy should and shouldn't eat. Here's what I wrote:
Leelo needs to stay away from sweet/sugary foods (this includes fruit juice), anything with artificial colors, and cheesy puffs/crackers & yogurt. None of these foods will make him ill, and small doses are okay, but more than a couple of mouthfuls will make him crazy and give him diarrhea.
We try to keep him on whole grain foods.
Leelo both likes and is allowed to eat:
- Crackers of any kind
- Croissants (whole wheat ones)
- "Power rolls" (basically a no-sugar raisin bun)
- Rice bread sandwiches with almond butter
- Bananas (with coaxing)
- Potato chips (sometimes)
- French Fries (sometimes)
- "Veggie Booty" (not in a few months though)
- Rice milk
For documentation purposes, here is Leelo's current supplement schedule:
- Multivitamin, probiotic, calcium powder in rice milk.
- 1/2 tsp cod liver oil.
- Second multivitamin in rice milk.
I do wonder if some of the intensive DAN protocol mega-nutrients he used to take were suppressing the sensory issues that are now taking over his life. But, as Supervisor Andil pointed out, Leelo never exhibited this intense sensory seeking pre-diagnosis, either--before he went to autism behavioral and biomedical boot camp.
Speaking of sensory seeking, my least favorite habit of his right now is when he hits me in the face and then immediately says, "No hitting!" Thankfully it's more of a slap than a roundhouse. And it will not last. No no no, it won't.
TweetSupervisor Andil Is Upstairs Right Now,
working with Leelo and Therapist Y.
Andil is the supreme Goddess of all things behavioral (on this coast at least) and checks in with Leelo's program every once in a while so we have a professional outside perspective.
She is always, always so cheering to talk to, or at least reassuring.
We talked about Leelo's plateauing. She said (basically) that the arc of his potential is far from over. In her experience and based on her research, some kids break out early, some break out in spurts, and some take as long as four years.
She does agree that it's odd that he's stalled given his initial rate of progress, but cautioned me to remember that all of his sensory issues--currently manifesting in hitting, body slamming, chewing objects and now licking items too (people, cars, sigh)--did not exist when the program first started. Those emerged later. If we can get them under control (and the remainder of this sentence is inference), perhaps Leelo can resume making cognitive breakthroughs.
We talked about potty issues. She says that in her opinion there is no real reason kids can't train in pull ups until accidents become rare, Leelo included. Our goal is to get him to hold his pee and poop until he reaches the toilet. Whether he wets a pull up or underwear is irrelevant. As long as we are consistent with taking him to the potty at scheduled intervals, and are reinforcing good potty behavior, I can clothe his bottom in the absorbent material of my choice. This is excellent news, as big mental hurdle for me is the thought of having to deal with shitty or peeful clothing on top of everything else.
She also mentioned that his frequently being dry at night is huge. Seventy-five percent of all boys are dry at night by age seven, so being dry at night at five is a real bonus.
She also said that she would train all the potty-training successes in the world for Leelo's natural social tendencies.
She observed at Leelo's preschool this morning, and thought it was a great program even though our boy had a rough time and was a big bundle sensory-seeking behaviors (he tagged Sage during their speech therapy session this morning, too).
I look forward to reading her write up and recommendations regarding both the preschool and this afternoon's home session.
TweetOur Guy Is Back. Sort of.
(Originally started 3/13)
That's what Supervisor M said after Leelo's fantastic aftenoon shift yesterday, during which he was not only compliant and didn't hit anyone once, but also took to three new curriculum items so well that Supervisor M decided to start phonics, too. Wow.
"Well, it is March. We usually get him back in March," I said when Therapist L told me what Superisor M had said. In this case I am happy for predictable behavioral cycles. Now we need to see what we can do to avoid Behavioral Hell Season next year (Dec. - Feb.).
In general he has been fairly pleasant to hang out with lately. Enough so that when Therapist C turned out to be a flake* and we lost Thursday afternoon coverage, I decided that for now we can just keep Thursday afternoons free. Thursday will be Excursion Day. Though, like many autistic kids, he still doesn't know what to do with himself when not directed.
He has started to spontaneously make observations about his environment, or items in drawings or photos. Things like "I see train," "I see trucks," "I see the waves," And..."I hear the Nutcracker" (current favorite CD and DVD).
Other good language lately:
"I want a kiss, Daddy"
"Manny is eating. Manny is eating beans. NO BEANS."
He is also back on cod liver oil. He really hadn't been taking it for over a year. But as he doesn't get much vitamin A or D from any other source, or essential fatty acids, I started a campaign to reintegrate it with his routine. If I get him to take the oil between bites of his whole wheat croissants, he is generally okay with it. Which is great, because there are few things more unpleasant than getting sprayed with a mixture of fish oil and French pastry.
With regards to toileting, we are still having some roadblocks at home. Last Tuesday when Therapist Y took a 1/2 hour afternoon break, he left Leelo in underwear and forgot to tell me. Leelo both wet and soiled himself while sitting on the couch (I was in the dining area folding laundry, with the boy in view) and showed no signs of discomfort. I discovered his situation only because I walked over to check in on him and almost fainted because of the smell. Sigh.
Yesterday Leelo woke up dry for the first time in over a week. I think it's because he went right to bed, and I had to wake him up in the morning. (During the previous week he'd fought going to bed almost every night and so most likely wet his pullups then--not while he was asleep.) This to me demonstrates that his involuntary bladder control is good and mature, and that voluntary control is the real issue--he does not yet care and may never care when he is wet or soiled.
He is currently having problems generalizing his little sister's and big sisters' labels/names. He keeps answering "Mali" for each. I am working with him on this.
I am in a bit of a slump, optimism-wise, with regards to Leelo. He is having a great time at his new preschool, but has been placed in the lower functioning of the two preschool classrooms. I truly do want him in whatever environment makes him happy and supports his skills, but am disappointed that our "high functioning" son has been on a plateau for a while now, and hasn't seen major progress--social progress, language progress--in a really long time. I realize that I shouldn't expect him to be anything other than what he is, but he did so incredibly well at the beginning of his program. We really did think he was going to continue to make notable, if not remarkable, progress. So for right now I am sad about not being able to reach my son like I'd imagined I might be able to at this point.
*Note to bright young things intending to enter the job market in any field, but particularly in the special needs kids therapeutic sector: Do Not Fucking Flake. Your word should be worth something. If you say that you're not sure about a job with my kid because another, conflicting but more lucrative job might be coming down the pipe in a few weeks, then please just cut and run as I advised in the first place. Do not tell me that you will commit to this job, start working, and then leave a few weeks later when that other job materializes after all.
I will probably go to hell for being so angry and resentful about the way you treated my son, but I suspect your thoughtlessness will land you on a pile of brimstone, too. While you burn, consider that the really enthusiastic demon with the extra-sharp pitchfork is probably me.
Seymour is gone for five days. With my blessings. This conference is very important for his career status, and also for networking with his peers in a rather obscure branch of professional geekitude.
But while he's gone, I am going to be sad and lonely. I will also stress about being the sole cowpoke tending our terrible trio of tots. Please feel free to feel sorry for me--in an empathetic rather than pitying way--as I already feel sorry for myself and could use a bit of cheer.
TweetBegging for Permission to Ask for Drugs
Below is this morning's fax to Dr. M., Leelo's pediatrician. It is the first of many steps in what apparently will be a rather complicated process.
Hello Dr. M,
We would like to take our autistic 5-year-old son Leelo Rosenberg to the MYND Institute at UC Sammy Davis Jr. for a psychopharmaceutical consultation. We were wondering if you would be willing to call them on our behalf, as they accept incoming patients via physician referrals only. The contact information is below.
Leelo has been in an intensive behavioral program for almost three years now. While we have seen great improvement in his development overall, his impulsivity and inability to focus for more than a moment at a time is becoming an increasing problem, and have led several professionals to advise us to at least investigate medication options. We are not interested in sedating him, but rather in helping him focus and/or tone down some of his self-stimulatory behaviors such as ceaseless fidgeting.
Please let me know if you would like to meet with Leelo and me before making any referral decisions. You can contact me at ###-####.
MYND Physician Referral Link
TweetSAHM Indeed. Pah!
Here is my current to-do list. Perhaps this explains why I feel a bit buried, and have aching molars from constantly clenching my teeth. Notice that there is nothing on there about cooking, cleaning in general, cleaning my desk or office, doing laundry, playing with kids, having a date or god forbid sex with husband, writing for pleasure, answering my enormous email backlog, hanging out with friends, scheduling a massage, etc.
Fellow soldiers, if any of your partners, parents, in-laws, or friends ever asks what you do all day long, I suggest you type up your own similar list, wrap it around a rock, and toss it at their heads. For the record, Seymour is mostly aware of and assuredly grateful for all the work required by my list.
Arrange childcare assistance during Seymour’s 3/21 – 3/25 absence next week
· Arrange childcare for Woolfcamplet—needed? in progress
· Blog Mali Milestones in progress
· UCSF Eval
Finish Leelo entry from last week
Arrange trip to Vancouver/Seattle
· Can drop off car in Seattle rather than at SEA?
Make sure Naam is still open
Ask Seymour’s mom about lunch atop Space Needle for Iz
· Make annual pilgrimage to present Leelo to Jury Commissioner and get out of jury duty
Sign Iz up for Outdoor Camp
Sign Iz up for Soccer camp (info from Ep)
· Reschedule Iz’s eye appointment
· Schedule Leelo’s annual eye appointment
· Schedule Mali’s first eye appointment
· Reschedule Iz’s dental appointment
· Iz: 7 year checkup
· Leelo: 5 year checkup
· Pat the Cat: Annual Checkup
Present to Gouda’s new baby
· Christening presents to Stacy’s twins
Birthday presents to Baby Picard
Birthday present to cousin Leigh
Birthday present to cousin Patrick
· Birthday present to cousin Kylie
· Bridal Shower gift to cousin M (G00d Vibrations?)
· Birthday Present for Tia Izobel
Mail left-behind jacket to Hayley’s sister
· Maya wrap/CD to TLF
· Mail Iz’s already-written thx notes
· Box of ignored correspondence
Write letter to Therapist C about why flaking on special needs kids is not a career-furthering move; include in package returning all left- behind music materials
Burn Gay Life in Dikanka CD for Dad, send
Burn Sage’s CD, return to her
· Burn CDs for Leelo so he can destroy them, archive originals in progress
· Godmother Hayley: Follow up re: forgotten questionnaire: still needed?
· Pay Car Insurance
· Pay House Insurance
· Pay stack of ignored bills
Fill out and send in form for Fnord early child development study
· Deposit checks
· Go through kid’s stack of shredded books, evaluate repairability in progress
· Order/Replace non-repairable books
· Order books from Leelo’s class list
· Order books for Esperanza’s in class reading program in progress
· Order Outside Lies Magic/Stilgoe book for Ambah
Send in Unitrust checks
Confirm tax accountant received final tax info email
· Consolidate kids’ college accounts
· Transfer girls’ college accounts to 529 plans
Sell stocks to cover this year’s building expenses
Summary email of next steps re: easement exhange and sewer easement redescription to architects and Seymour
Email builder re: rescheduling utilities meeting until early April
Architects: need site plan for determining repurposing of utilities for builder
Contact Real Property department about documentation for Fee Title
Follow up with Title Guy about Title Report for easement exchange documentation
· Fill out documentation for easement exchange application in progress
Print out documents for easement exchange to show to neighbors
· Get 10 (ten!) signatures of neighbors for same have 9
· Write Building dept head asking for permission to live/build simultaneously
· Follow up with CDF re: hydrant flow certification
· Follow up with Deadwood water district re: will serve letter
Checks to Architects
· File all related documents/create folder
Iron Gate Leftovers
· Write last two newsletter articles for Iron Gate by 3/24
· Send in Leelo/Navidad photo for same
· New Leelo bookmarks for three omitted Leelo classmates
· Return handbook
· Mend and return nursery playmat handles as promised. In June.
· Blitz campaign for new Leelo store
· Go through eList recommendations for psychopharma consults in progress
· Send in Handicapped placard application?
Fax primary physician re: meds consult for MYND Institute
Call HMO about referral since PCP's office bounced it
· Read Overcoming Autism book chapter on stims
· Read Supervisor M’s “straight talk: kids & meds” book
· Finish Deadwood School District kindergarten application in progress
· Follow up with The Head of special ed re: IEP if no news by 3/24
Distribute OT report to Supervisor M
· Finish writing captions in Leelo’s Day book from two years ago
Get schedule for ALSO Summer School
Fill out ALSO Summer School application
Arrange summer therapist hours for gaps between school sessions
· Oil change scheduled
Get detailed as inside is disgusting
· Replace bald back tire
· Schedule recall appointment with dealer
TweetIf you're not entirely pissed off about South Dakota, MB Williams of Wampum gives yet another compelling set of reasons why you should be. Badger already pointed to a site describing how right-to-lifers often sing a very different tune when the political becomes personal.
So, what are you doing to protect your rights and the rights of the women you love? I have doubled my annual donation to Planned Parenthood, which isn't nearly enough. I will also be writing letters to my congresspeople. What are you doing? Speak up, I can't hear you. What are you doing to protect your daughters, sisters, mothers, aunts, cousins, and friends?
TweeteBay item #11092000: Leelo Rosenberg
I came very close to posting Leelo as an online auction item today, after he bolted all the way down our driveway and into our neighbor’s carport while I was buckling Mali into her car seat. He covered a distance of 200 feet before I could blink, and ended up 10 feet from a steep slope into a winter-deep creek. I think everyone in the entire neighborhood heard me hollering at him. (That bodes well for my trying to collect their signatures on one of our easement-fiddling documents.) I only caught him because he chose to stop in the carport.
He has never in his life dared to run that far, or that fast. He always stops at the point where our driveway narrows, about twenty feet from the car. I guess he’ll be getting buckled in first from now on—Mali is picking up steam but certainly isn’t going to outrun her mother any time soon.
Later on he pulled the same thing on Babysitter A—but in her case he tore up the steep hillside at the opposite side of the yard, and ended up at the gate three feet from the upper street. Again, unprecedented. Babysitter A says that she’ll be sure to wear only sneakers from now on.
The only reason you are not currently able to bid on your very own autistic five-year-old is that he spent the rest of the day being sweet as pie. He was really snuggly, listened well, and demonstrated real joy in being with—and interacting with—his family. He sang with me, sat all heavy, warm, and relaxed in my lap while I read him books. He used a lot of fantastic language. It’s all still basic language, but he’s using it more frequently.
Plus he had a good first morning at ALSO preschool. I’ve not yet had a chance to hear how it went from Therapist L, who accompanied him, but his new Teacher W said that the day went really well.
We’ll keep him for now. But he’ll definitely be a Watched item.
TweetIz: Oh, I Hope Big Noggin Takes Her
Iz keeps me constantly laughing at her unabashed geekitude. But she needs more same-aged, same-interest geeks in her life. Kids who won’t snicker at her when she says things like:
“Mommy! You TiV0’d another NOVA for me!” (starts chanting excitedly) “No-VA! No-VA! No-VA!”
I want her to find friends who will stay with her after she absorbs all she can about the discovery of DNA’s double helix, and starts musing to her dad, “It’s so odd to think that something so tiny controls everything about us. It’s spooky!”
She needs to be around kids who won’t blink at her specific vocabulary in using “expect” where most people (her mother included) would use “think,” or her always articulating the T in “often.”
For all the wonderful friends she has, she’s still hasn’t quite found her missing piece. This afternoon she was rather subdued, so I asked who her best friend was (because usually that is a cheering topic and results in five names) and this time she only shrugged. She needs someone to tell her stories to, because right now she’s embarrassed about them. She told her Seymour that she spends days and sometimes weeks muttering stories to herself about being an orphan girl who goes to live with Hermi0ne from HP, and other such saved-from-isolation fantasies. She won’t tell them to us or write them down because “That would take a whole week!” But I bet she’d tell them to her best friend.
TweetAdios, Iron Gate!
Yesterday was Leelo's last day at Iron Gate. Woo hoo!
I will miss Sage, and the kids, and the very cool parents, and Teacher P. I will not miss being the parent of the outlier kid who needs all the special attention and is always causing a disruption, and whose classmates do not invite him over for playdates (though their parents, especially those who are family friends, have been very thoughtful).
The exception is his classmate Navidad, who adores Leelo and could care less about his odd behavior, and who is now his facilitated playgroup partner on Fridays. I just love that girl.
I am going to one final class meeting tonight, as it is the all-school evaluation and it is the responsible thing to do--my input is expected. However, after that I am cut loose! No more night classes, maintenance work, fundraising, any of that shit, until Mali goes in next year. Woooo dawgie.
I don't know how all those other Iron Gate families keep it together. I am exhausted. Beyond exhausted. I wanted to quit months ago but, of course, will do anything for my little guy--and so stuck it out.
Yesterday was also Leelo's final day of independent Occupational Therapy (OT). Thursday will be his final speech therapy session with Therapist A, who did his first ever intake when he'd just turned two, taught his infant-toddler language class, and basically has been the only person who's seen Leelo through his entire delayed development arc.
Oh well. ALSO, his new school, costs not a whole lot more for 9 hours of instruction per week (including an hour of OT) than 1.5 hours of speech and OT did at the same facility. I think it's a good swap.
This morning I went to check out the local Deadwood School District autism preschool. The special ed folks wanted me to see it because if they are able to create an autism kinder class next year, these are the kids and that is pretty much the setup said class will have.
It was a great class. It was also shockingly similar to the ALSO preschool. I mentioned this to The Head, and she concurred. Apparently the two programs swap teachers frequently, and so were developed along similar tracks.
The Head and I agreed that Leelo will need a kinder placement for next year, and that placement should be in a special ed class--ideally the autism kinder class if it does in fact happen. She said that it was too bad we didn't get Leelo in the autism preschool at the beginning of the year, as now it was too late. I said that we really did think Iron Gate was going to work out this year, and that's why we never investigated the school district class.
She also said that they could start offering him speech and OT as soon as we get things squared via the IEP. Which she will call me to schedule within the week. And about which she told me to not be afraid, that they're fairly easy people to work with and that I don't have to agree to everything proposed in the first meeting.
We're finally moving along. I knew we'd be in IEP land one day, and here we are. Should be interesting. I hope hope hope we never ever have to end up bringing a lawyer on board.
TweetAnother Resolution Fizzles
I swore I would never nurse a child capable of asking for it. But, alas. Just now Mali yelled, "UP!" and, after I put her in my lap, pointed at the twins and said, "This? Nurse?"
So, the weaning isn't going all that well, thanks. I thought we'd cut out daytime nursing but apparently not. If it was possible I'd simply cut her off and then spend a week in Spain or New Zealand--an ocean between us would make damn sure we were done. But I won't do such a thing to this baby if she's still interested. Leelo and Iz didn't mind being weaned. Mali does. I remain stuck in the prison of my own lactation until further notice.
Maybe I'll throw myself a weaning party when she finally does kick the habit.
TweetBuy Leelo Gear or Else
Another Finally: I have set up a store in which to sell Leelo gear. Everything in the store sports the image below. All proceeds from the store will directed to the National Association for Autism Research (www.naar.org).
Why NAAR? Because NAAR is doing a hell of a lot of research into the causes of autism. It is my hope that by the time my kids are ready to procreate, researchers will have isolated at least some of the genetic factors contributing to autism. I suspect that having grown up with an autistic sibling or being autistic will color the kids' opinions and choices, should any of them desire genetic counseling.
If you wear one of these shirts, you will automatically be so cool on so many levels. The most important one to me, though, is that you would be unabashedly proclaiming that not only do autistic kids like Leelo have friends, but that you're proud to be one of them. So go shopping already.
TweetA Smattering of Notable Links
OMFG. Our own lovely Ep has finally joined the blog world. For those of you who don't know, our core Bad Mom quartet is Badger, Jo Spanglemonkey, me, and Ep. It took us almost three years to convince our resident skeptic to join our Hive Mind, but...finally.
In other Finallys, I have sort of figured out how to post iMixes. Heavens know when I'll get to posting another, so savor this one for now. Keep in mind that Win iTunes and Win FireF0x do not play nicely together.
We're planning on having a Woolfcamplet for Jo Spanglemonkey on 3/25, since she couldn't make the first one. Go to the bottom of the Woolfcamp Wiki for info and to add yourself to the list of attendees if you'd like to come.
TweetAttention Grammar and Punctuation Junkies
My brain is on hiatus to the extent that I cannot even multiply 17 by 5 without help right now, so please tell me which of the following is correct:
"I'm a friend of Mortimer's"
"I'm a friend of Mortimer"
No money riding on this one, just my pride and a chance to say, "Nyah nyah nyah, how dare you doubt me in such matters." (Although the doubter in question will read this entry in which I am obviously doubting myself.)
A bleak day for me. Nothing worrisome, just weeks and months of tiredness suddenly dragging me down. Perhaps tomorrow can be a day of rest.
TweetIdeally, One Cites One's Sources
If you got here via Mary Tsao's BlogHer post about autism (thanks Mary!), please know that I did not coin the Snowflake analogy to describe the unique nature and symptoms set of each autistic child. Someone else wrote it--Denise Minor? Autism Diva? The good folks at Neurodiversity.com? I've not retained the source and have no time to research it as I'm holding down the fort solo, and Leelo is most likely about to slug his baby sister or climb on top of the TV (as he did yesterday).
If it was you, you are brilliant and thank you very much for the illuminating imagery.
TweetJust in Case You Need Help Falling Asleep
I never knew that remodeling a house could be so complicated and yet so dull. Witness the jolly dispatch I got to send to the architects today:
This morning I dropped off both the sewer easement redescription packet forAren't you just salivating, wondering What Comes Next? Were you even able to wade through that dreck? Gaaah.
F. in planning, and the sewer location/carport drawing for K. in Building--with
C. in SMC Planning. She will forward both packets to the persons in
Yesterday I spoke with MC of the CDF Fire District (ph#).
They do not have any hydrant tests on record for our street, and so will
need to do a new test on our closest hydrant. This involves coordination
with the DWC Water Dept., and a $171 fee. M said it should all be taken
care of by month's end but to call him if we don't hear from him by then,
which I will.
Yesterday I spoke with M2 of SMC Real Property (ph#). He will
be handling both of our easement issues in terms of the county's rights
(i.e. the current step), and is sending me a packet of materials with which
to proceed. There will also be a $!!!! retainer fee for the process, though
we will be refunded any leftovers. Any chance we could track down the
planner who told us we could build in the setback, and see if she or he
would like to foot this bill? (Cue cynical cackling.)
M2 has forwarded our documents to Public Works. Generally it takes a
month to hear back from them. I will follow up on this as well.
In the mean time, I have spoken to P (ph#) from our title
company (Fidelis). He doesn't see any reason why our building into
the walkpath's setback would affect or exclude us from coverage. The
walkpath itself would be listed as an exclusion from coverage as a known
matter of record. M2 (SMC Real Property) said that the county does not
require documentation of the title situation, that it is a matter between
the title company and us as owners, and that they alerted us to the need for
title coverage as a courtesy to help us cover all contingencies.
I so very much wish this entire house process was over and done with already.
TweetNot a Scenario I'd Anticipated
While Seymour was away last week, I moved some of my, erm, "gear" into a more accessible place--the back of the sweater drawer of my dresser (it usually lives in a secret place where no one will ever ever find it because then they would suspect that I am a sexual being and we cannot have that).
At any rate, no one has ever opened my sweater drawer, either, so--while the very small OCD part of my brain was nattering at me to return said gear to the vault--the more practical and overwhelmed by Seymour and Iz's returning accompanied by my parents part of the brain said, "Eh, why bother."
So, of course Iz came out of my room the other night wearing both a sheepish look and one of my sweaters. When I became very cross and demanded to know what she was doing with my sweater, she became upset and penitent in a much more dramatic fashion than I would expect from a mere sweater-swiper.
This is not a scenario I'd ever imagined discussing with a child. The fact that I will not even name what I'm writing about may clue you into how reluctant I am to talk about the nature of my self-love with my seven-year-old daughter. Aaaaaaaaaaigh. I will talk and have talked about any other sex subject with her--why did she have to go snooping through my drawers?
My reaction to her innocent sneakery has made her reluctant to follow up with her usual questions, I can tell. But I don't want to let this go unaddressed. Advice? Assvice? I'll take what I can get (obviously).
TweetLeelo: Somebody Medicate That Boy!
Yesterday was another evaluation day for Leelo. This time the Deadwood School District Head of Special Ed and her psychologist came to observe Leelo at Iron Gate. After about an hour of watching him, and once some pleasantries had passed between the three of us, I mentioned that we had had a psychopharmacology consult at YouCSF.
"I didn't want to bring up that subject myself," said The Head, "But it seems to me that he isn't able to sit still long enough to learn. That he really wants to, that he's bright and capable, but that he honestly just can't focus for more than a moment at a time."
"Yes, I know," I said. "Supervisor M and I think that our boy is most likely dual diagnosis autism/ADHD."
"That's a rough one," said the psychologist. "It's hard to tease out the symptoms, and figure out which condition is causing them."
"Still..." mused The Head, "It would be great to find a way to help him calm down, so he could follow along in class. Right now he really can't sit still, and that's a barrier to participation."
"I understand," I said. "We are open to a careful and methodical exploration of the topic."
"That's good. I'm glad to hear that," said The Head.
"Barrier to participation" is an ominous phrase, don't you think?
Similar concerns were voiced by the head of ALSO preschool, the place he'll start at next week. And by Supervisor M (again) during our team meeting yesterday.
Supervisor M's concerns mostly center around his inability to "organize." Leelo has real problems with sequencing, as (IMHO) evidenced by his inability to sing an entire simple song--no matter how well he knows it--unless in a supremely focused moment, or prompted.
So, a second meds (sorry, I will no longer write out "psychopharmacology") consult is in the works. This time I will try for an appointment with the folks at the MYND Institute. Babysitter A went to a presentation by one of their bigwigs, who discussed autism and meds at length--far beyond the three meds (Ha1dol, Rita1in/Risperda1, and Na1trexone) advocated at YouCSF.
Meds are a last resort. We would not be using them for our convenience--no matter how many jokes I make about drugging the kids before we go to a restaurant--nor will we accept any stupefying effects. The goal is to help Leelo, to see if his almost uncontrollable impulsivity and activity can be toned down to the point where he can take advantage of opportunities to learn, communicate, and play. I think he really wants to, and simply can't.
Of course my mind concocts miracle scenarios where new meds result in a Cure!, simply because that is what parents in my shoes do. I recognize that my meds-based daydreams are unrealistic. What I do dare to hope for, however, is that Leelo will have more chances to use his rarest smile, the one he puts on when he figures out something all by himself. That's my real fantasy.
TweetAny Einstein Can Tell You That...
I got Leelo this Einstein shirt to fuck with peoples' heads, and also to remind any parent of a child with language delays who ever gets told, "Well, Einstein didn't talk until he was almost five," that Einstein was most assuredly on the autism spectrum.
Leelo's not excited about getting his picture taken, lately. But I had to document the best cowlick ever (see arrow).
Also, stalwart Seymour finally put together the kids' seesaw. It is awesome! They keep taking headers off of it, particularly Leelo who doesn't seem to think it necessary to notify other riders of a dismount, but I really do think that this is something that will eventually allow Leelo and Iz to play together without facilitation or badgering.
Iz's Foray Into Comics
I am spending part of today cleaning the office. While excavating many things from the drifts atop the desk, I discovered this page from one of Iz's comic books--I'd meant to scan and brag months ago. (She is too abashed to let me show people the comics themselves, though they also are great.)
Two things about this page crack me up:
1) She's already internalized the reader's need to see more! more! and is playing on it, and
2) She's already designed her imprint's logo.
LOVE IT! (Click to enlarge.)
TweetSuch Easy Targets
I love having Catholic children over. When they start snitching on each other--wanting me to intervene--I just tell them that, "Every time you tattle it makes Jesus cry." Usually works.
I am done serving as intermediary for children six and older unless blood or physical injuries are involved. Or severe bullying, or ganging up. These kids are now officially old enough to settle things amongst themselves. I don't want to hear about it.
TweetMore About A. Diva's Fuck'n Awesome Neurology and Gestation Post
In response to UnderH20frog's comment below:
I don't think Autism Diva meant that all autistic children become autistic at that gestational point, but that some of them may.
Also, if a mother (of genetically susceptible children) consistently harbors sufficient levels of chemicals/metals in her body to tip the balance, then the environmental insult theory could indeed support three autistic children within the same family.
I personally am waiting for the day when autism gets divided into its formal subtypes: Genetic, Genetic/Environmental, Dietary, etc. I am tired of living in idiopathy.