7.27.2003

Our DAN/biomedical meeting to discuss Leelo's hair, blood, urine, and stool tests was Friday. Totally reeling from the results--our boy who eats five things is allergic to them all and everything else in the universe plus we have to pull him off sugar and put him on 5 or 10 or 60 supplements 2x/day. Plus B12 shots, accupressure...does that cover it? So far we've determined that he can eat almond butter. And maybe homemade spelt puffs. But lo, we've been instructed to vary his diet so as to not create additional food insensitivities, so must figure out other options.

What's a concerned, completely overwhelmed mom to do? Run to the coast for the weekend! Commune with sea lions, get drunk with partner, slurp oysters, pretend problem doesn't exist. (Many thanks to my folks, who came early for the ABA training sessions and watched the kiddlings while Seymour and I had our indulgent denial weekend.)

However now we are back and I have to write up the actual discussion notes and attack plan so as to make sense of it all. Will post that soon.

My dear darling friends' reaction to the DAN meeting results: "You have to use The Crazy Book?" (My friends are the best. They read everything I give them on autism, bring me articles, and refuse to let me mope in the corner. Plus they are liberal Bush-hating freaks.)

Now, let me be clear on this--I think Karyn Seroussi's book Unravelling the Mystery of Autism is an invaluable resource. I bow down before her harrowing experience and efforts to help others. After due diligence, we are pursuing many if not all of the therapies she advocates. But, just as she has a problem with non-believers whom she confronts with her CF/GF party line in the grocery store and then disparages in print when they don't jump on her bandwagon that very instant, I have a problem with her tone--it verges on hysteria. I can practically feel her eyes bulging. And I feel for that poor woman in the grocery store. Her child was newly diagnosed and she was probably still in one of the grief stages that precedes acceptance. I'll bet she would have appreciated a nice, calm ration of information, instead of an attack.

On a completely different page, I also spent a lot of the weekend enjoying blogathon. It is comforting to know that other people keep their kids' placentas in the freezer.

7.24.2003

Isobel threw a hair-raising tantrum late this afternoon. I suspect its onset was due to low blood sugar since her dinner consisted of a single nectarine, but she denies this.

Our yard is at the bottom of an amphitheatre-shaped canyon, with houses all 'round us on the upper slopes. She chose to have her fit on the porch, so once again I find myself not really surprised that our extra-fancy neighbors pretend we don't exist--obviously we beat our children; why else would they make such a racket time after time?

Sigh. If these people every made eye contact, let alone talked with us, they might know that we have a boy who gets very excited about the sound of his own voice, and will joyfully vocalize at the top of his lungs, indefinitely. They'd know that we have a super-bright and spunky and therefore highly combustible girl who, during twilight/the witching hour, is prone to tantrums because Leelo and I went out the door first and she wanted to do that! In the mean time we'll just leave ugly things like dead floor lamps next to the back of the garage where they can see them, and we can't.

Now, I don't know how other folks handle tantrums. I've gotten stinky looks that make me suspect they're willing to tell me, but too bad--my job is to make my kids understand that tantrums are ineffective as bargaining tools. (My job is not to bend over for complete strangers.) Kids, you can yell and scream all you want. I'm not going to get riled, I'm not going to give in, and you're sure as hell not going to get whatever you're screaming about. Believe it or not, folks, the kids usually wear themselves out after five minutes or so. And they sulk and toss grouchy comments at you afterwards. Be strong! Eventually they figure out that tantrums aren't useful. But don't let their blood sugar get too low--then all bets are off.

None of the above tantrum advice really applies to Leelo. He's not yet able to communicate well enough, for one thing, and besides his tantrums are usually 30 seconds of: scream, drop & roll, protest protest, oh fine okay you can pick me up.

Tomorrow is the dreaded DAN doctor meeting. Oh please please please don't let us get put on a casein/gluten free diet! Please!

Today Leelo spent his day putting various teletubbies on the couch, then delightedly telling me "Po is on the couch! Tinky-Winky is on the couch!" Which reminds me, if you really want to torture a child who delights in consistency, give him a set of teletubbies like ours: Three talk, one doesn't (guess which one I bought and grandma didn't). Poor Leelo spends probably too much time trying to get Po to talk. One of these days I'll brave Toys-R-Us and go get the talking one.

7.22.2003

Just realized that this blog is a little sketchy on the details of our ABA program. Well, that 's because we're still setting it up. Here's how we arrived where we are:

  • Early September 2002 (Leelo 21 mos): Pediatrician friend notices that Leelo doesn't make much eye contact. Suggests that further evaluation wouldn't be a bad thing, couldn't hurt. I freak out. Seymour says no worries, the boy's okay.

  • Late September 2002 (Leelo 22 mos): Take Leelo to his own pediatrician for ear infection #12 or #13. During appointment ask pediatrician if Leelo could be autistic. Pediatrician says "Let me tell you what an autistic kid is like: screaming, no touching, rocking, basic stereotypes." Leelo smiles at pediatrician and lets him look in ears. Okay, the boy's not autistic. Could he get ear tubes then? Pediatrician: Let's talk about it if he gets another ear infection. And if you're really worried about his behavior, here's a local kiddie head-shrinker. Talk with her, but do it fast as your insurance doesn't cover her. Oh, and a hearing test wouldn't hurt. Go see the fine folks at Stanford.

  • October 2002 (Leelo 23 mos): Local child psychologist with credentials and experience up the yingitty-yang says, hmm, he's really little. Let's chat in 6 mos. The lovely, kind folks at the California Ear Institute note how consistently he looks at that crazy noisy monkey reinforcer. He has no hearing problems.

  • November 2002 (Leelo 24 mos): Leelo starts local co-op nursery school. It is fun. He is youngest and littlest in class, and so shouldn't be expected to talk and play at same level as the other kids.

  • December 2002 (Leelo 25 mos): After four weeks of classes, Leelo's teacher says honey, I need to talk to you. Your boy has language and social delays and needs to be evaluated. I now hate and resent this woman, but follow up on her referral the very next day. I get an appointment with a local speech pathologist--in three weeks (this will be a recurring theme).

  • January 2003 (Leelo 26 mos): Speech pathologist says um, yes, delays. Let me refer you to our local Regional Center (county evaluator and funder of programs for children under 3). They will fund a small-group language skills class for him. I say, can't we just start him in the class right now and pay for it? They say, well, no, it's really expensive, and the evaluation process won't take that long. Off you go! With no other information or support. I am starting to fret in earnest now.
        Track down overworked but kind social worker. Two separate appointments, with the first to happen in three weeks. First one at home with the social worker, second one at the regional center with a specialist MD.
        I am not waiting a full six months to regroup with that psychologist. Series of expensive meetings and evaluations to start in three weeks.
        At this point I also freaked out on my amiable but less-than-proactive pediatrician and jumped ship to a new one who said yes, let's put tubes in posthaste--go see this really nice ENT (ear, nose, throat specialist). In--say it with me now--three weeks.

  • February 2003 (Leelo 27 mos): Psychologist says, maybe 40% chance it's autism. We just don't know. Any additional advice? Well, let's wait awhile. My fret meter goes up a few more notches
        Go to the regional center, where the doctor plays with Leelo for 35 minutes or so, then turns to me and says "If he was 3, we'd call this autism. The social worker will give you additional information. Must go, I have to diagnose 5 or 6 more kids today." (So, not a bad man, just an overworked one.) Still, I just got hit by a truck and basically have to figure out how to scrape myself off the ground. A packet of information is thrust at me. Too bad, my eyes don't focus right now.
        Social worker says, hey, let's set you up with those small-group language classes at the local school. You mean those ones I wanted to start last month? Yes, those ones. But the regional center will pay for it. First you need to go back to the school and have an intake evaluation. Didn't I already do that? No, that was a regular evaluation. Intake evaluation to be in three weeks.
        ENT says yes indeedy, ear tubes for this poor little guy who just had two more ear infections. Head X-rays first (ever tried this on a non-verbal two-year-old?) to make sure he doesn't need those adenoids out too.

  • March 2003 (Leelo 28 mos): I spend a lot of time working through various grief stages. Get stuck a lot on pure grief, as no one has told me anything other than that my son has a severe, life-long handicap.
        Language school intake evaluation is fine (minor social delays, moderate language delays). Leelo will start the first week of April.
        X-rays reveal no adenoidal issues. Ear tubes go in the first week of April.
        No one knows what's going on in our lives except a few dear friends. We don't even really know what's going on.

  • April 2003 (Leelo 28 mos): Ear tube surgery is a breeze. Leelo recovers in hours
        School begins. One-and-a-half hours, twice/week. Leelo doesn't get the highly structured routine yet, but he's generally okay with it.
        First day of April: I get pneumonia. This is a bummer as Seymour and I are supposed to go visit my cousin MD in Japan in two weeks. I am bedridden and use the time to search amazon.com for best-selling books on autism. Catherine Maurice's Let Me Hear Your Voice arrives, as does Karyn Seroussi's Unravelling The Mystery of Autism. This is how we discovered ABA therapy. What the hell? How is it that not one of the professionals we've talked to has told us about ABA therapy? Or dietary approaches? What the FUCK? .


  • So, that's how we got where we're going. That's why I'm raging on here. Just in case there's a chance all this ranting helps a family in need find out about these therapy options months sooner than they might otherwise.


  • Fuckers.



7.20.2003

It's still way too fucking hot. Here's an example of the synergystic relationship between the sweltering and my mood: Jo, Ep, and LH joked about going bowling. I have no humor when it comes to this subject:

Jo: I would bowl with y'all. One must choose
> > one's bowling partners
> > carefully, however. Otherwise the experience can
> be
> > a bit overwhelming in
> > its close and reminiscent relationship with the
> > nation's midsection.

Squid: > I hate bowling. Or any other sort of semi-organized,
> team-prone sports. Maybe if there was a lot of beer,
> though...

Ep: > Are there teams in bowling? D'oh!

Squid: Is there bowling without teams? Doesn't matter. I hate
bowling. I hate sports and games in general. And it's
so damn hot right now that I think I hate everything
else, too.

Ep: That's the spirit!

Really, though, it's usually perfect here. Two weeks of fucked up sweaty-assed grouchiness is tolerable. So say I when it's not those two weeks, anyhow.

----

Today we went to a great kiddie party up in the mountains, at the house of the most insanely creative artist/woodworker/designer we know. He can dream up anything, build it or repurpose it, and make you cry when you see the results. Makes me realize that my brain's creative center has either atrophied or died.

Anyhow. Isobel and Leelo were all about the paddling pool, so Iz immediately tore off her clothes--right there in the middle of the party--and demanded swim gear. Then, naked, she patted her bottom and announced to me in her usual top-volume manner:

"Mommy! My bottom feels good! Do you want to touch it?"

She does have the world's cutest bottom, it's true. And I do like to pinch it and give it pats. But. But!

7.19.2003

Major freakout from the boy today. Took him up to SF to get his hair done by Ab, the world's most fabulous stylist/doula (she helped birth both our babies and so doesn't mind trying to tame their hair). He would have nothing to do with it. Took one look at the clippers (used in every single haircut he's ever had) and starting sobbing. Brandished madeleines & chocolate chip cookies held no sway. Finally had to take him back home still sporting his grown out rockabilly boy 'do (it's now a combo rockabilly/bowl cut--very attractive).

Rest of the day consisted of more funky behavior--supreme hyperactive nuttiness, including more uncharacteristic handflapping, and wacky vocalizations non-stop. I took him for a walk down our street, and can say that for the first time he was acting oddly enough that he couldn't 'pass.' Seymour says it's the heat, as Isobel is on her own behavioral bender. I think it might be chocolate/sugar. But I hope it's not.

See, we're in the middle of doing all those test to see if he meets the criteria for biomedical intervention. For the uninitiated: some autistic kids' symptoms have been found to be linked to dietary causes, usually casein (a milk protein) and/or gluten (a wheat protein). Other foods can be problematic, too, for instance--chocolate, bananas, soy, corn--to the point where the child's daily meals require intensive monitoring and production. As mentioned before, we are not super-peppy organized parents. We are on the happy-go-lucky, we're late for school and you haven't eaten breakfast so let's pick up a donut on the way end of the spectrum. So, while we will take on the specialized diets if we really have to, I hope hope hope that all four of Leelo's tests return normal results. The meeting with our local DAN doctor is this Friday.

And oh, those tests! Not a one was pleasant. The hair sample required way too much hair, so to the keen-eyed our boy's head now appears slightly moth-eaten. The blood samples required larger draws than I would think ethical for a 31-pound little guy. The stool test required poring over and excavating samples from stinky diapers for two days straight. And the urine needed to be a 24-hour sample, so our little guy had to walk around with a pee bag stuck to his nethers for that period (afterwards he walked like he'd just gotten off a horse, since the removal of five back-to-back adhesive urine bags left his groin pretty raw). Poor guy!

Ah well. It is after 11. Hopefully I'll have better luck falling asleep tonight--last night Scabby the cat jumped on my head as I was falling asleep and blew out some sort of sleep circuit--I ended up stomping around upstairs until 5 A.M. (watching old Buffy episodes, attending to weighty and therefore unanswered email, tidying up kiddie clutter). Seymour was a dear and let me sleep until mid-morning, but I woke up to raging cramps, stuffy nose, barfy stomach (a week now--what is UP?) and sticky, enervating heat so today was not a happy day of action items and social achievements.

Our other cat, Pat of the idiopathic bladder condition, has taken to peeing on items left on the floor (he won't just pee on the floor, though, which I guess is a bonus). Anyhow, I have pointed this out to my partner several times, but I can see his workbag and it is sitting right in the heavy casualty zone (dispatched so far: 3 pairs of my shoes and $150 in books). Will I do anything about this? Hmm. Problem is that I can't remember even truly important things these days, so even if I intend to move the bag it might not happen. Memory holes example: yesterday my mom told me that my pilot brother JD was in a plane that suffered some sort of mechanical failure or explosion upon takeoff (no one was injured). I immediately forgot about it until this morning when I was searching through my address book and saw his entry. I immediately called and verified that yes indeed he was neither dead nor maimed, but by this point it'd been a good day or two. I am a bad bad sister, a bad bad cat and fish owner, and a tolerably competent mother. I think these are the right priorities but I've heard that some people don't make these choices.

7.18.2003

Leelo is doing great. So great! He has spontaneous requests of up to six words ("I want to see Teletubbies again!"). This shocked the pants off of MH his program supervisor--she had only previously observed brief prompted requests. Since we haven't formally started his ABA program, she has only seen him ~1x/every 3 weeks/past 3 months--so she sees giant strides where we see semi-daily progress.

However, this week was a backslide for him in terms of social skills. His repetoire of rote greetings/dismissals (Hi, Daddy, How's it going, Bye Mommy, etc.), which are usually (prompted) guarantees--especially with mom friends Jo and Ep--were almost absent. Freaked out, I keep spinning excuses--"well, he had chocolate; well, he's getting his two-year-old molars; well, he has a cold; well, his poor dad accidentally tripped while holding him and he got his head bonked on the concrete and now he has a slowly leaking brain hemhorrage and things are just going to get worse and worse..."

Sigh. His eye contact is given very reluctantly this week as well, almost never by request. I don't know how successfully other autistic kids' parents play the chipper No Really, We're Doing Okay role, but I am really good at it--until a relapse like this makes me feel like someone just cracked open my chest with a sledgehammer. And then I forget to make use of daily living skills, like brushing my hair or teeth before leaving the house. I even installed a mirror right by the front door so I can do a last-minute safety check for true hag errors (conversation-disrupting-sized zits not covered up, etc.) but rarely remember to use it. If my friends haven't mentioned the deterioration of my appearance (which, to be fair, hasn't really been a priority for me since Isobel was born, and I met most of them afterwards) does that make them good, bad, or scared?

When one's mood is black, it helps to be able to amuse oneself however one can, even at the expense of one's partner. Yesterday I came into my room as Seymour (spouse) was playing with Leelo. I wanted privacy to get dressed, and dropped many hints, but Seymour didn't clue in. Exasperated, I finally told him that he was welcome to watch me put on my menstrual gear if he really wanted to--and he almost exploded out the door in a cloud of "I don't want to see that! I don't even want to hear about it!" Nyah hah hah!

Back to ABA stuff: Supervisor MH came over yesterday to meet Therapist F. MH was sly in pulling rank and testing Th F's skills, though not in a evil way. "So, you're using a token system...why don't you explain to Leelo's mom what a token is?" etc. Therapist F held up well although I could tell she was nervous. Later on new therapist E came over (she will be doing less discrete trial work and more incidental learning stuff). She takes the Leelo-initiated directive for Incidental Learning very seriously, and even followed him into/started playing in my bedroom before I could stop them (fortunately there were no garments of questionable origin on the floor/bed).

I am starting to realize that home-based therapy is going to be invasive--we live in a small house, and I am an introvert who just wants to be left alone most of the time. Too bad for me! We don't have the spare room or basement that every single family I've ever read about uses--OUR discrete trials will occur in the living room, and apparently everything else will occur wherever Leelo wants it to. This means that, on top of everything else, I have to keep my house clean! Crap!

Final blow for the day: Supervisor MH has recommended that we call Leelo by his real name, as she says using his name and nickname interchangeably will only confuse him. This would depress me less if Seymour hadn't tried to convince me of the same thing the day before. Fuckers. Leelo is what he calls himself! Grrrrrr.

7.16.2003

Happy to report that frequent flyers Max and sisters Eliz and Sophie were over again today. No Che. Happy dervish fairies ran amuck, and no wings were clipped (well, Iz was being a pain in the arse, but that's her job)! Hurrah!

Leelo was not a fairy, although he enjoyed watching them.

I will be happy when our ABA program starts in earnest (training/orientation starts in 12 days!). Right now we have one therapist, F, who has been doing wonderful work for about 2 months 'until we get the program set up,' working about 5 hours/week. However there is no supervisor, no team meetings, no real feedback forum. So, we have a tiny tyrant on our hands. If he sees me anywhere near a computer, he runs over and peeps "Mommy's lap? Mommy's lap? See the boats? See the boats?" Do I really have to honor this request 30+ times per day? Sometimes I can get away with saying "boats all gone" (neutral tone!) but this doesn't always work. Plus it can lead to four or five minutes straight of "Boats all gone?" "Yes, Boats all gone" (repeat four score or so times). Now, no one is more grateful than I that he is talking, doing so spontaneously, and giving great eye contact with these requests, but do I really, really have to play that frigging video all day long? It's perseveration, right? Guidance! Please!

Anyhow, point of this blog is to record Leelo's daily (or semi-daily) progress as he enters an intensive ABA (applied behavior analysis) program to eradicate his autistic symptoms and behaviors, but I suspect his story will emerge piecemeal and will be mixed up with those of his family, relatives, and friends to a healthy degree.

Update on Isobel and the same-sex marriage conundrum: Turns out she has focused her attentions on Max because she proposed to Tea and was rebuffed. So that's an acceptable outcome. Still po'd at my mom, though.

More gender issues amongst the preschool set: Two days ago Isobel, her male fiance Max, and their sister friends Eliz and Sophie raided the dressup box and were playing 'fairies' with all four resplendent in sparkly wings and huge puffy late-'80s prom dress petticoat slips that made them look like dervishes when they spun. (Digital camera was card-full and battery-poor, of course.) At some point, Max's friend Che arrived. Did he join in the fun? Oh no--instead, he stalked up to joyous, flitting Max and demanded to know what Max was doing in a dress. Poor Max immediately wilted, stripped off his finery, and slunk off to do perfunctory boy things as designated by Che. GRRRRRRRRRRRRRRRR. The two boys are both FOUR, for chrissakes.

--

Went back and was watching never-before-seen videos of Leelo and Isobel from way back when--Leelo at 12 mos - 18 mos and Iz somewhat older than that (took me 18 month to finally finish the tape and send it to my dad for dubbing to a real videotape; yes I am incompetent with anything that involves more than one cord):

--Leelo at almost 13 months: joyous, engaged, babbling into the camera for almost two minutes straight, delightedly showing us his body parts
--Leelo at just past 14 months: Not smiling much, not responding to his name, playing somewhat listlessly.

This is eerily reminiscent of a salon.com article I read years ago, in which a mother discovers that her autistic son's behavior changed dramatically between home video sessions--and that one thing that occurred in the interim was his MMR vaccine. Now, I remain healthily skeptical of vaccine-based and biomedical/dietary autism theories (we are investigating them, yet will not swallow them whole without consideration). Still, after viewing that video I will definitely be reviewing Leelo's medical files for vaccine dates and antibiotic types/dosages.

7.14.2003

Time Warp

Today is actually January 22, 2004, but I am doing email purging and just found this outgoing email, which was sent to my darling cousin on this very date:

Hey Dearie,

Had any good basashi lately? Har har har. Really, though, how are things in
Matsumoto? Found any other new, cool little towns with extra-specialness,
like organic wasabi or something like that?

Things are great here. Leelo's therapy, etc. is starting to get underway in
earnest, and he is doing wonderfully. Iz has decided to become a cook as
well as a cheese fiend. Three days ago we made homemade pesto, two days ago
it was homemade minted lemon/limeade, and yesterday it was a sponge cake
(which is deceptively complex as the ingredients list is short, but you have
to beat all the egg yolks and whites separately and fold them into each
other in stages). This has only got her more excited about cooking more more
more! I think I'll sic her on godfather M the professionally trained
chef. She's also decided that she and Seymour are going to run a combo ice
cream/cheese truck (cheese in the winter and ice cream in the summer). I can
come along if I really want to.

As for me, well, I have decided that I am happy to be an exhibitionist as
long as it's done in an anonymous fashion, and so have started a blog about
Leelo's program, and my cluttered brainspew in general. I am sending you the
address with the understanding that you are a cool girl who will NOT share
the address or location with ANYONE in our family since I rail on them all
so frequently. http://shroomhead.blogspot.com.

7.13.2003

Well, I suppose the very best thing you can do after setting up a new blog is get sick--immediately--for several days. Lack of posts builds mystery and anticipation.

And although this is mostly supposed to a blow-by-blow about Leelo and how we're hauling his little butt back from autismland, I've got another topic to blurp about first:

Leelo's four-year-old sister, Isobel, loves to talk about how she's going to marry our five-year-old neighbor girl, Tea She's got it all set up, too--Isobel will be the one to have the baby and take care of it, while poor Tea is going to do all the 'bum wiping.' She's going to take Tea's last name, too. (The fact that she'd yet to propose the scenario to Tea daunted her not one bit). If other kids at school told her she couldn't marry a girl, she'd give them the four-year-old version of "fuck you I can do whatever I want." Her self-satisfied liberal mommy was oh-so-elated.

Well, lately she's decided she'd rather marry her best friend Max, who is a boy. Why the change of heart, you wonder? Well, it turns out that my very own dear mother--who up to this point has been politely directing all her remarks about our errors in childrearing to me--decided that she needed to take this one into her own hands. She told Isobel that girls could only marry boys and that girls who did otherwise were doing something wrong. I am sure Isobel mentioned to her grandma that her friend Molly has two moms and who are married and share a last name, but I suspect my mom verbally steamrolled her. So now, instead of the usual joyous proclamations about Tea, I hear mutterings about marrying Max.

When I confronted my mom about this, she took the stance of moral indignation, i.e., "Well, you KNOW it's wrong!" No, mom, I don't. To paraphrase my eloquent dear friend Ep (after Canada's recent landmark decision to legalize same-sex marriage): who exactly goes gay marriage threaten?

So, anyhow, I had to pull mom rank for the first time and told her that she was no longer welcome to share her opinion on this matter with her granddaughter.

Now hopefully she'll stop talking about how people lose weight to be thin, as opposed to being healthy...

Legitimate Leelo entry later, possibly tomorrow.

P.S. Yankees, if you're considering going to Canada to get a legal same-sex marriage, there are three things to consider:

1) Your marriage won't be considered valid in the United States--yet.
2) Canada will consider your marriage absolutely legal--so much so that to get a divorce you'll have to live in Canada for a year first to establish residency.
3) If you get all hopped-up and hotheaded and decide to go to Canada anyhow so that you can come back here and file a case to legalize your new state of wedded bliss, don't--at least not until you consult with someone like Lambda Legal (www.lambdalegal.org). A badly-run case could set the cause back years.

7.09.2003

Yes. Tomorrow.

Yes. Tomorrow.

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