TweetMy New Hero
Is the red-headed receptionist at Leelo's pediatrician's office.
Seymour and I dragged the entire family into the office before 8 AM, as both Leelo and I needed to do fasting labs, and I didn't think I could handle dual phlebotomy sessions on my own.
Leelo went in first, with Seymour. Twenty minutes later my boys were still in there, because Leelo fucking freaks out completely during blood draws. The lab tech had to enlist everyone she could to help out. Everyone in the building could hear poor Leelo howling.
Meanwhile I was sitting in the lobby with the girls, watching the chairs fill up with people who were also there early to get quick labs done. After only a few minutes, they started grumbling. Because although to me "walk in labs" means "appointment roulette with fairly decent odds," to everyone else it apparently meant "I am entitled to a wait of no more than ten minutes." One of them got up and starting railing at the receptionists about how he had been there for almost thirty minutes (he hadn't, he came after us) and how all he needed was a quick stick and go and how it shouldn't have to take that long and how there weren't that many people in the lobby and ...
The red-headed receptionist pinned him back in his chair with her steely gaze, and said, "Sir, there is a child in the lab right now who needs the attention of all of our lab workers. I would hope that you could show some compassion for a child."
The entire lobby was silent from that moment until Leelo came out a few minutes later, still sniffling, with angry red poke-patches all over the insides of his arms, and our entire family exited that particular stage.
I wonder if she babysits on weekends.
TweetMy New Hero
TweetPanther and Cyst Resources
Iz wants to know what the Black Panther Party is all about. Anyone know of a kid-friendly site or resource? The Wikipedia entry is not her speed.
They've got a decent entry for her on dermoid cysts, though.
I found our silverware!
Until that marvelous discovery, we'd being making do with one regular sandwich knife, four plastic spoons, and a packet of plastic forks donated by Signora Blog (who brought us a wonderfull chicken dinner, too).
Still can't find the plates, though. And our tupperware. And our griddle (no griddle means no pancakes means grumpy Leelo).
TweetNewberry = Death
Iz's latest kick is plowing through the backlist of Newberry Award books. She's a bit displeased with their tone:
"Mommy, I don't understand why if Newberry Award is for the most distinguished contribution to American literature for children that means that someone in the book has to die. This book [The Higher Power of Lucky] has someone dying before the book even begins!"
I told her that many adults think that "distinguished" means "demonstrates how awful life can be for some kids so as to make happy innocent children more grateful for their swell lives" and that I don't see why "distinguished" can't simply mean "beautifully written, imaginative, and entertaining." If you were a kid and your life resembled one of those tragic tales, wouldn't you be rooting for some quality escapism?
Iz and I just finished reading Walk Two Moons together last night (thank you for the gift, Godmother Stacy) and by the end we were laughing in horror at the carnage: four people met tragic ends, and another two were in horrible car/bus accidents. Seymour was playing with Mali nearby, and he couldn't help chuckling with us.
I can't think of how the well-written but unbelievably depressing "Out of the Dust" was chosen over the delightful "Ella Enchanted" without rolling my eyes.
In other Iz news, she is definitely peering over the fence from Little Kid Land into Big Girl Territory. She wants to know why Lindsay Lohan got arrested (she saw it on the cover of a magazine in the store), is desperate to watch as much Hannah Montana as possible (she got to watch it with her cousin and grandmother in Hawaii; thankfully our cable still isn't hooked up), and really wants to read People magazine. I remember hungrily plowing through my aunt's Enquirers at her age, and think that I need to find some way to feed the beast what it craves. Perhaps a subscription to Jane magazine. Which i will read and censor first. Hmmm.
Holy crapola, that kid can talk. Apparently running at the mouth is her substitute for sleep, as it is almost midnight and she is still going strong; if I was a betting person I'd wager that her needle is stuck at 500 rpm. I thought Iz was the hands-down queen of both the stream-of-consciousness commentary and the random stranger attack greetings, but I think her baby sister may dethrone her. And that is a frightening thought, if you know Iz.
"Mommy! Don't stick your head under the bed! Your head is too big! My head is too big! It gets stuck under the bed! M&M Bear's head is too big! But Medea's [new cat, short story*] head is not too big. She is waaaaay under the bed. Hi Medea! Do you want to come and play with me? Medea! Come here right now!" (Various wheedling meowing sounds commence.)Probably my favorite thing that she does right now is yell out her exact location when you call her name:
"Izzy! Get off of me! I want to go see Mommy!" (Iz was sitting on Mali's stomach, as per my request to "watch Mali for a minute while I take Leelo to the potty.")
"Mommy! This is my dolly. She is upset. No, she's happy. Because she has curly hair. And curly eyes. And a beaaautiful dress. Do you think she's happy?" Squid: "I'm not sure, do you think she's happy?" Mali: "I don't know! Can you make a happy face? Can you make a sad face? Can you make a surprised face? Can you make a concerned face? Don't worry, I'll give you a biiiig hug."
"I want to go on the trampoline! It's not Leelo's turn, it's my turn! Can I go on the trampoline with Izzy? Noooooooooooo! It's my turn! I don't want to get off the ladder! I don't want to go on the little trampoline! I want to go on the big trampoline!" [Commence air raid siren volume tantrum]
"I'm right here! I'm in the bathroom! I'm inside the cupboard! I'm under the sink!"*The previous owners of this house left their (formerly friendly, now somewhat traumatized) tuxedo cat behind when they moved. They only admitted to abandoning her after a query from our realtor, at which time they asked if we wanted her. We did.
TweetSo Many Changes for Leelo
Leelo is at summer school right now. An entirely new school, with entirely new staff, and only one little boy whom he may remember from last year's ALSO summer program. It should be great for him; it is a behavioral class specifically for kids like Leelo, it tops out at four students, it's full, and it's overstaffed. The director, who spent over ten years at a local fully dedicated moderate-to-severe autism school, told me that "there is nothing Leelo can do that will surprise me." Still, I feel anxious about dropping him off, cold, into an entirely new situation with no familiar supports only two weeks after the end of school, less than two weeks after we moved into our new house, and two days after returning from vacation. I hope he is okay.
I am grateful that he got to spend the morning swimming with Babysitter A, and that Seymour fixed up the (big, very big) trampoline yesterday so that Leelo got to spend all the time he wanted on it before we left the house today. Also I took Leelo to Sewerage for his favorite "naan bread" lunch right before school started. He was in a very good mood when we walked into his classroom.
But, again, I am very anxious. Leelo is spending three hours in a totally novel environment, and will not see a single familiar face or item except the pair of chewed up straws he brought with him.
TweetNot That He'd Use the Fly Anyhow
Finally cleaned out Leelo's school backpack this morning. (School may have ended two weeks ago, but summer school doesn't start until this afternoon.) I am extremely grateful that Leelo had no potty accidents during his last few weeks at school, seeing as what I thought were a pair of gray little boy briefs were actually tattered ladies' bikinis.
TweetGuess Who's Coming To Visit?
A mom on the Deadwood moms' email group recently requested advice on how she should get ready for a visit from a relative and that relative's tweenish autistic son. Since I am not one to shut ye olde yap, here is my response:
You are very thoughtful to even send out this query. However kids with autism are all very different from each other, so what works for one kid will not necessarily work for another.
The best advice I can give you is to try to create a safe space for your relative's son to retreat to if he needs to. Even if it's just a chair, though a room (even if he is sharing it) would be ideal, so that his mom can retreat with him. Also try to help your kids understand that it is probably best to not surprise their cousin in any way if they can help it. Your littlest may need your help with this goal. (Though, again, it might not be an issue.)
But, truly, I would ask your relative directly for as much guidance as she can give you. If she is like most autism parents I know, she will be grateful that you asked. Be frank, and be open to her suggestions. Is he verbal? If so, what kinds of verbal interaction can he tolerate? Is he conversational? What kinds of social situations does he like/dislike? What kind of activities does he enjoy/detest? Does he have any "triggers" that set him off? Is he aggressive? Does he have any behaviors that you should tell your kids about, so that they'll know that those behaviors are totally normal for him? Are there any special foods he likes? Does she have a routine that he can implement, even partially, at your house?
I have some books for young kids about autism and hanging out with autistic kids, and would be happy to let you borrow them. I will be back from Kauai in two days (we have discovered that our son will tolerate travel if it is to a swimming destination), so if you like I can contact you then.
Good luck, and have fun. Most kids with autism have an immense capacity for pure joy.
Were it up to me, we would never leave.
This is where I will go when I die.
I will be one of these fish.
I will still be able to see this sunset.
And remember Iz surfing. (She got good enough to do a few tricks. Too bad you can't surf our home beaches without a wetsuit.)
And see the pool where Leelo went swimming every day.
And think how cute it was every time Mali squealed, "Wainbow!!*"
And of course eat spam, eggs, & rice for breakfast every day.
*No need to worry, Joshua. Her speech patterns are age-appropriate.
I had to laugh at today's "Routine" entry in Leelo's daily record spreadsheet:
Therapist L 9 - 12
Swimming 12:30 - 1:30
Therapist L 2 - 5
Luau 6 - 9
He was such an incredibly good, happy boy on the plane, and has been every since we've been here, ever since we moved into the new house. I give thanks to his naiad sisters for welcoming him back to their waterlogged bosoms; he is obviously very at home with them.
Also I would recommend the Princeville Luau to any autistic children who would like the freedom to run around and visit the beach mid-show or mid-dinner if need be, especially those who have seen Lilo & Stitch 500+ times. Leelo adored the fire dancers.
TweetLeelo vs. GFCF
I am still wondering about him stopping rice bread/starting PB&J's on wheat bread at almost the exact same time he nosedived and wonder again if it wouldn't be worth having a second DAN! opinion as I always felt a little skeptical about our original Dr's understanding of Leo; I don't think our boy fit the profile of kids he is able to treat successfully. I have heard from more than a few people that DoubleTrouble's dr. operates more intuitively. However if I was to explore the rice bread hypothesis I would not take action until May when by all logical and past data taking and personal experience Leelo should be back to being himself. Seymour pointed out that Leelo takes nasty-ass cod liver oil by mouth and got used to that and we have in the past had successes (trials though they were) in getting him to change his diet from six everyday things to six GFCF things. Perhaps we should just press it. Do the dietary equivalent of Potty Training By Fire, and have one of us take him into a remote cabin where he is offered only one food that we would like him to start eating and nothing else until he starts eating it. I am kidding of course, but I do think if we can get him to successfully introduce a new item to his diet then it will just become rote. And, even though Therapist L has been doing a lovely job working with him to try different foods, I think the biggest push really does have to come from home in order to make a difference.
TweetWe Are In
Iz has been going to camp all week looking like no one loves her as I can't find any hair brushes. At least she's got sunblock on. She had a bit of a hysterical homesickness fit on the final day in our old house, but otherwise is very pleased to be here.
We had no TV for the first three days but then Seymour got TiVo back up. It provides a decent, if static, backlog until the cable people find our house and we can start rotating her selection again. She wants to know if anyone else has ever noticed that all movie moons are either full moons or waxing gibbous.
Leelo thinks the new house is great because it has a pool. He spends much time with his nose up against the pool fence, and He also thinks hardwood floors are wonderful for scooting around on his back, pushing with his feet. However it took me a few days to find his Claritin so his sniffles have returned and that makes him grumpy. He has not yet been on the trampoline (or, thankfully, recognized it as such) and will not get to go until we return from Saturday's one week vacation and have time to shop for pipe insulation to put on the trampoline's safety net's concussion-enabling metal bars. I am grateful that his transition so far has been a mellow one.
I have been using the same fork and knife all week
I have been carrying my cell phone everywhere because I can't find any of our other clocks or alarm clocks.
Mali bits: Maybe it's poo-poo? I want to go to my new house. Falling on her belly: That was close!
TweetFlying With Leelo
We're going to Kauai in two days. All five of us. It is a swimming destination, which is pretty much the only kind of destination that Leelo is willing to put up with these days. However, in order to get there we have about six hours of flying and three hours of layover. Not my choice, but the difference between a direct flight and one with a connection cost more than our week's lodgings. So, a connecting flight.
Leelo hasn't flown much this past year, and certainly hasn't taken a five hour flight in at least two years. I am very nervous, but thanks to my friend DoubleTrouble I know that even if Leelo is loud and annoying and kicking the chair in front of him, we can't be kicked off the plane. Here is the PDF she sent me about disability rights and airplane travel, plus her favorite excerpt:
U.S. Department of Transportation: Nondiscrimination on the Basis of Disability in Air Travel
SUBPART C -- REQUIREMENTS CONCERNING SERVICESPerhaps an iron-on version for Leelo's travel day t-shirt is in order.
§ 382.31 Refusal of transportation.
(a) Unless specifically permitted by a provision of this part, a carrier shall not refuse to provide transportation to a qualified individual with a disability on the basis of his or her disability.
(b) A carrier shall not refuse to provide transportation to a qualified individual with a disability solely because the person’s disability results in appearance or involuntary behavior that may offend, annoy, or inconvenience crewmembers or other passengers.
(And, yes we are in the new house and it is both wonderful and so completely insanely overwhelming that I am only remembering to take every other breath.)
Tomorrow our phone and DSL get shut off, and transferred to the new place. This means that for a time frame depending upon whether or not the DSL really gets hooked up, and whether or not Seymour has time to set up our wireless network, I will be offline.
Does anyone want to come over to our house and make a wreath or smaller keepsake item out of trimmings from the lavender bush we acquired the weekend we got knocked up with Iz and transplanted to this yard, but which is now far too established to risk another uprooting? Call me if so. Needs to be done by Sunday. I would so very much be in your debt.
TweetMomentary Break From the Relocation Frenzy
Dee, this list is for you. What would have taken us* close to a year to laboriously compile on one beloved video tape can now be found in moments via the glory of YouTube:
Style Council: You're the Best Thing
Style Council: My Ever Changing Moods (Bike Version)
The Beat: Mirror in the Bathroom
The Beat: I Confess
The Specials: A Message to You, Rudy
Special AKA: Girlfriend
Bangles: Going Down to Liverpool
Bangles: I'm in Line
The Three O'Clock: With a Cantaloupe Girlfriend
Scritti Politti: Wood Beez
Madness: It Must Be Love
Boingo: Private Life
INXS: Original Sin
OMD: If You Leave
Simple Minds: Don't You Forget About Me
Grandmaster Flash: White Lines
And, of course...
*I should have written "What would have taken you close to a year..." as my parents refused to get cable until I was already in college.
Dude, I am going to miss this place. I know that we'll get to come visit, and that we're making tradeoffs that will overall bring our family greater happiness, but I woke up every morning and came home every day grateful to be in such a beautiful environment:
I also recently realized that all three of my kids are currently in the youngest class/grade at their schools, and that in Mali's and Iz's cases, they are actually the school's youngest students. Won't be the case after this week; new babies will be arriving in the Fall. Which means my kids are getting older and less baby-like. And I am sad about that.
Also glad, though, in Leelo's case at least. Even though I've been up since 4:30 due to his waking up at that point, coming into our room, and turning on the overhead lights. I am okay with the sleep disruption because he did so out of the need for us to change his poop pullup. In the past, the middle-of-the-night poop would have been a disaster. He was wearing pajama separates (he refuses to wear the turned-around footie jammies anymore) and usually would have woken us up not deliberately but via the overwhelming stench of his excavations as he decorated the wall and everything else in his room. I am happy to be living with an incrementally more mature Leelo.
TweetMore Good Leeloisms
From Daily Record Spreadsheet:
When bored between school and afternoon session, started pushing around the bar stools [something we have him do as a sensory/weighted activity], and then tried to get into the (locked*) game/puzzle cabinet for a puzzle. [He was trying to find something to do as opposed to wandering aimlessly--v. wonderful.]
Allowed me to read him three Dr. Seuss Beginner Books in a row.
Spent a lot of time reciting colors: "Red Yellow Green Blue!"
When we were reading books this evening, he turned the books over so only their mostly solid-colored backs were showing, and exclaimed (correctly, and with pointing), "It is yellow! It is green!"
Has been saying a lot of "There it is" and "There we are" with pointing while we're riding in the car.
*Because of Mali, not Leelo. There is no way in hell I'm going to clean up Mali's Puzzle Confetti -- Now Featuring Twelve Different Motifs.
TweetLeelo! My Schedule! Talent Show!
It's almost 2:00 and Leelo hasn't hit me once. He did push me over on my keester as I was crouching down to help him with his shoes, but I'll overlook that on account of his:
1) Selecting all his own clothes and dressing himself completely and independently for school, and
2) Running in the house when we returned from his Sage speech therapy session, and spontaneously using the potty.
I am hoping this week's move doesn't throw him for a complete loop. He is doing so well right now.
And, speaking of people who will start moving in a little more than 48 hours, I am loopy myself. I've gotten a lot of work done, but there is much preparing even if professionals are doing the bulk of the packing and moving (much like having someone else clean your house; you have to--or at least I have to--spend a good while tidying up and organizing beforehand). And it is difficult to find time to do so when one's days look like this:
8:00 Leelo to school
8:30 Sigh escrow documents four towns over
10:00 Talk to various agencies about changing address
11:25 Pick up Leelo from school
12:00 Leelo to Occupational Therapy
1:00 Leelo back home for Therapist L
1:15 More phone calling, cleaning kitchen, laundry
2:30 Parent orientation for Iz's summer camp next week
3:30 Return home, thank Jo for picking up Iz and bringing her home, collect Leelo from Therapist L, realize that all three kids are at home simultaneously and that nothing will get done.
4:30 Grocery run for dinner
5:00 Realtor comes for document collection and last few items chat
5:30 Make kids dinner
6:00 Send Iz to neighbors to get ride to talent show
6:15 Thank Babysitter K for coming to watch Leelo and Mali, greet Seymour, drive to Iz's talent show
6:30 - 9:00 Talent show
9:30 Iz to bed, lie on couch in stupor
That was yesterday. Today is somewhat similar. At least my stomach is back into tolerating caffeine.
I must say that I enjoyed the Big Noggin talent show unreservedly. Well, almost. I do wish that some of the girls would embrace the fact that their range is more suitable to the soundtrack of Annie and stop trying to sing Disney or Celine Dion ballads. Though one girl took on Christina Aguilera and succeeded beautifully, which is impressive. There were a few other kids with almost professional talent, but for the most part it was pure goofy fun. I especially liked the pogo stick duo, and of course watching Iz warble her way through a short solo from High School Musical. She hit many of her marks, sidestepped a few others, and her group got huge cheers and applause just like every other act. Let me know if you'd like a link to the video.
Off to panic/pack. Break over.
TweetLeelo Yesterday and Today
V. busy packing so here's some data straight from Leelo's daily home record/spreadsheet.
Got a real kick out of having people repeat his phrases: "Is that a line?" Also spent a long time doing reciprocal vocalizations, e.g., he would sing increasingly complex acapella scats, I would repeat them, and he would laugh like hell.
Slapped/hit me a lot when I didn't do what he asked, for instance not letting him ride on my back if he wouldn't sit in a safe position, when I wouldn't let him have a second croissant and instead tried to redirect him. Very sweet and snuggly otherwise, though.
Lots of good language "Oh, there it is!" "Get out of you chair, Mommy" "I want to go outside, Clyde" "I want to ride on your back, Dad" "Play the horn, Dad" "Play the whistle, Dad" "I want to go spin the globe."
Less hitting; a lot of interacting with visitors to our house; seems to be realizing that people will pretty much do whatever he wants if he asks them. [Cool!]
TweetA Link for Your Twittering Irritating Pregnant Friend
I do have to thank Screamything for being so clear-headed about the bloody, overwhelming, painful chaos of new motherhood. Yet we still get funny hats on the baby, doses of love/shock, and beholding The Cuteness.
TweetGross Taste in Mouth
And barfing! Though I haven't barfed in 24 hours, so that's nice. I can't get this weird perfumey taste out of the back of my mouth, though.
I hope it is stress rather than a virus as I was cooking for friends and Iz's classmates all week long. Now that I think about it I've been feeling sick to my stomach since Tuesday; it was only on Thursday (which was the week's cake-topping stress-popper) that I actually had a four-stage stomach-emptying involuntary vomiting session. Though the next morning I couldn't get out of bed without feeling like I had to hurl anew.
Whatever. You probably have enough barf in your own life.
This is our big packing weekend, as we move next weekend. I have farmed Iz out to the very kind Armada and family for two days. We have a decent amount of babysitting for Leelo and Mali. I will not allow myself to get bogged down and wade tearfully through my kids' art from the last seven years; no, it will go into boxes just the way it is. I am efficient; I am a machine!
Though, speaking of tearful, Mali asked me, "Can you pick me up?" this morning, which made me very sniffly. In general her conversational pronouns have been absolutely perfect in every way, far better than anyone else's 2.5 year old (need you ask)--with the exception of two phrases: "Can I pick you up?" (meaning Mommy please pick me up) and "I hungwy!" She better not lose that second one any time soon; it is too cute and I must get it on digital video first.
Happy weekend to you. Hope you at least are getting to enjoy what in this area is one of the most gorgeous late Spring days imaginable.