No better Christmas gift than family and friends who make the effort to spend time hanging out with Leelo amidst the chaos of ten kids from four families at our house for a full turkey-and-good-china Christmas dinner, and who all pitch in to clean up afterwards and leave us with a sparkly clean kitchen. Seymour and I actually sat down for part of dinner *at the same time* thanks to Leelo help from my cousins JP and DD.
Seymour and I are both beyond exhausted, beyond stretched, so I didn't think today could be anything other than a tolerably stressful Christmas. But because of the wonderful and supportive people in our lives, we were able to snatch moments of real pleasure and real joy, and enjoy both our food and our excellent company.
I hope you were able to snatch some real happiness today, too.
TweetMotherTalk/MomCentral is currently hosting their best blog tour ever: James Patterson's ReadKiddoRead. (James Patterson being the author of the Maximum Ride books coincidentally and currently being devoured by my daughter Iz.) I would have been interested even without the Amazon gift certificate the tour organizers dangled in front of me.
If your kid is anything like my kid, and not content to have books on hand, or to go to the library on Mondays, or to surf the Amazon.com "also boughts" for recommendations, if your kid wants more more more book recommendations all the time all day long, and isn't satisfied by Newberry credentials ("Those books are all so depressing, Mommy! Everyone always dies!") then ReadKiddoRead is a godsend. If you're simply interested in a well-organized resource for finding your kids nice meaty, enjoyable books to read, then ReadKiddoRead will merely please you immensely.
James Patterson talks about the idea behind ReadKiddoRead:
"A few years ago, I realized my son, Jack, didn't exactly love books. We'd always read to him as a baby, and he was beginning to read for school. When he got home, him going to the shelf and picking up a book was about as likely as his pulling out a notebook and solving quantum physics problems. Actually, the latter was more likely. He's a smart kid.Judy Freeman, the site's primary reviewer, has this to say about why ReadKiddoRead is so important:
"So Sue and I took it on ourselves to fix the problem if we could.
"Starting that summer, and every summer since, we went out and found books that I was pretty sure he'd not just read, but would love to read. That was a big part of the inspiration for READKIDDOREAD."
"James Patterson’s mission is to get kids hooked on unputdownable books that will lead them to other unforgettable books that will launch them as lifetime readers. Naturally, to become a reader, you need to be surrounded by good books. There are more than 5,000 children’s books published every year. How on earth do you figure out which ones are the best ones to read to or share with or recommend to your children? That’s where ReadKiddoRead can help.Aside from thoughtful book recommendations for kids of all ages and inclinations (I especially appreciate the understanding that some five-year-olds are ready for books like City of Ember), the site contains interviews with authors such as Julie Andrews, links for getting free books, and (warning!) access to the dangerously slippery slope that is Shelfari.
"We’ve tried to help make your job easier with this website, culling a select list of cutting edge books we believe your kids will love. We couldn’t review every exemplary book out there, so included with each title is a list of more treasures (If You Loved This Book, Then Try) on the same theme or subject or by the same author, that will keep kiddos reading and exploring.
"Will every single book listed here ring your child’s literary bell? Well, no. That would be impossible. Children’s book tastes are far-ranging, just like yours are. So, we’ve gone through thousands of books to come up with an eclectic mix, balancing historical, hysterical, drama, fantasy, contemporary, mystery, suspense, animals, fictional, fact-ional, and then some. We think it’s a compelling assortment of titles that will really pop. Some are more for girls than boys, or vice versa; others are more universal in theme.
"I like to tell kids, “Everything you read makes you smarter and makes your brain grow. But if you always read the same type of book, your brain will develop an unsightly bulge. You need to try a bit of everything.”
The main is nicely organized into four main reading levels, each with four sub-categories of recommendations, but it is not infinitely deep in terms of the number of books. This is okay -- there's a lot of additional current and potential meat in the Ning, so don't forget to join the increasingly lively ReadKiddoRead community and help this potentially amazing resource grow and flourish.
Technorati Tags: ReadKiddoRead
TweetFound a draft documenting one of the most brain-exploding weeks of the last while, in terms of stress, logistics, work, etc. overload, and posted it as-is, under its original time stamp. Want it documented that I would not have survived that week without my wonderful friends.
Meanwhile the house is full of nieces and nephews (ages 1, 2, 4, and 13) and brothers and sisters-in-law and my mom. And my mom's very well-behaved dog.
We are having a good time, but it is very very very stressful (though it seems Leelo has little interest in tiny children who are not Mali). I am trying to get more help with Leelo so that Seymour and I don't become holiday stress casualties, and I don't end up in the urgent clinic with chest pains that turn out to be an anxiety attack, like I did last year. Though last year we hosted a bunch of parties during the holidays as well; this year we are not being nearly so stupid. We are only having super-large Xmas Eve and Xmas dinners. EASY!
Seymour and Mali will leave after Xmas to spend a few days with Seymour's parents; the day after they return we will send Iz to play in the snow with her cousins for a few days (and perhaps she will stop moaning about being "the only person I KNOW who has never been skiing!" even though I've told her that most of people we know do not and have never skied, because of the expense, logistics, unpleasant weather, and/or free time required.)
Interviewing a new therapist in the AM, to potentially replace Therapist R, who is going back to school.
Leelo has apparently gained 5 lbs since he started Abilify. We need to figure out how to get him more exercise.
Leelo is still getting up at 5 AM or earlier, consistently.
Xmas gifties and cards, not getting out on any kind of timely schedule. Which is fine, I'll give myself until New Year's. Or longer.
TweetCheck out PF Anderson's analysis of the social media juggernaut and pure awesomeness that was Autism Twitter Day. For context, a quote:
For comparison with other trending topics, today the 100 page archive for Obama goes back 4 hours, for Santa 6 hours, Xmas 5 hours, and for iPhone 4 hours. The day of the Autism Twitter Day event, the stream of discussion about autism was so intense that twice during the day it outstripped every other topic on Twitter. For one December day on Twitter, autism was bigger than Obama, bigger than Xmas, bigger than Santa. WOW.Thanks again to Bonnie Sayers of Autism Family, for the creativity and sheer force of will that conjured Autism Twitter Day from the social media ether. I hope it will be a yearly event.
TweetHey Tweeps! It's Autism Twitter Day! Click through to a very worthy cause:
Back to our regularly scheduled program:
Sage, who is both a dear friend and Leelo's SLP, came over on Wednesday night before Thanksgiving. She had agreed to work with Leelo on food tolerance, and had waited weeks for me to fill out formal documentation to set up the program. So, while I suspect she may have also come over to keep me and Leelo company while Seymour and the girls were spending their first night in Las Vegas, she was also there with a purpose.
She sat me down and had me fill out an inventory of what, exactly, it is that Leelo is eating. Which is:
- Peanut Butter and Jelly Sandwiches (smooth PB, small bit of jam, most breads are fine)
- Whole wheat croissants from the Campbell Baking Company
- Naan Bread
- Pretzel sticks
- Bisquick pancakes that Mommy makes, hot off the griddle only, often with grated carrots mixed in
- Burger King french fries
- Rice milk with vitamin, calcium powder, and probiotics mixed in
- Plain crust french bread
- Soy yogurt (stolen from sisters, sole food eaten with a utensil)
- Fruit smoothie from Espresso Lane
- Sweet plain lassi (Indian yogurt shake)
- chocolate chips or plain chocolate
- Odwalla Superfood (green) juice
- Corn/tortilla chips
- "Ritz" crackers
- Finger foods
- Avocado (texture like banana plus he used to eat it)
- Dip apple in yogurt or honey (he may like dips of treat foods like soy yogurt)
- Crunchy dried fruit
- Salted Roasted Nuts, especially the drier almonds
TweetI know why I'm tired. I know there's not a whole lot that can be done to fix my tired, or Seymour's.
I also know that those of us who are stressed find it easy to judge other people and become righteous, because we know that we, or our friends, have it worse financially or logistically or emotionally.
Oh, wait, that last one doesn't count, does it?
It should. I tend to believe people who confide that they're overwhelmed, even if their scenario appears less intense than mine. Because I'm not living their life, or trying to keep their bubble from popping. I wrote about our tendency to compare and judge stress levels somewhat thoughtfully in July. In this, a less thoughtful moment, please know that those with uncharitable comments about the steam-venting and consternation-processing that follows can fuck right off.
Abilify at its current dose does not seem helping Leelo as we'd hoped. It has been three weeks, and so far we are seeing:
1) Increased irritability, manifesting in more intense and focused bouts of aggression
2) Constant hunger/unrelenting requests for food
3) Increased spaciness/distractedness (as noted by teachers and therapists)
4) Increased sleepiness after taking the drug, but
5) Early waking, at or around 5:30 AM. Occasionally as early as 3:30!
6) Poop witholding! Even with resumed extensive teletubby toilet time
This means that, when Leelo is home and without an aide, which is most of the time, I do very little aside from monitoring him so he doesn't hunt down Mali and deck her, distracting him from asking for food, or trying to get him to stay on task. There is very little successful setting Leelo up with activities while I get things done. This means I currently spend very little time with his sisters. The girls are put out to the TV pasture or sent into their room to play.
This means that even making a simple dinner is an exercise in panic, as I monitor Leelo and his activities on the counter, the girls wherever they are, and ensure that they do not cross paths. I almost had a heart attack when Iz had her friend Violet over for dinner two days ago, trying to play the role of the cheerful mom who was providing a regular fun dinner for the girls (make-your-own paninis) while surreptitiously keeping already-fed Leelo from attacking me from behind.
This means that we shouldn't go anywhere with Leelo. At the moment I'm not even taking him to the grocery store. I certainly am not doing any errands with him and Mali in tow, not even our previously ritualized Tuesday morning run to the local coffee shop.
This means that it's not a good idea for us to have people over, not unless they're aware of what they're potentially getting into, and have heightened perimeter awareness and fast reflexes. Iz's friends are starting to realize that our home is not the happy fun place to visit that it used to be, which makes me worry for Iz's social life. I am not sure what we're going to do with my Mom, two brothers, and all of their families spending over a week of Xmas joy with us.
I am so scrambled that I didn't make my bed yesterday, for the first time in over a year. That activity, superfluous as it seems, is a sanity watermark for me. Even on days on which I've forgotten to brush my teeth because the bus forgot to pick up Leelo, my bed has been made. I can walk by my bedroom and feel a flash of satisfaction that one small part of my life, at least, is tidy and neat and predictable. But sleep deprivation and overwhelm have stomped out what remains of my already lackluster organizing skills, and not only did the bed not get made, but I forgot about it until I was running out the door to get the three kids to their three different morning destinations and had no time to go back. I am trying to keep a list of all the everything I'm supposed to be doing, but it is so overwhelming that, instead of picking a list item after Leelo goes to bed, I generally decide to watch an episode of crappy TV (and instantly fall asleep on the couch anyhow). It's taken me three days to finish this post, and I have a slag heap of unfinished moans from the past month. The only manageable time is now, in the mornings, while the girls are still in bed.
I am really sick of being hit, head-butted, scratched, shoved, and pinched. And of flinching when my son is nearby. Emotionally sick. Because, occasionally, Leelo is still being sweet and snuggly and giving kisses and asking for hugs, and being the wonderful boy we love. But that Leelo is currently missing more than not.
Dr. R, Leelo's meds doctor, suggested that Leelo's current dose (5 mg) might be insufficient, and recommended that we try dosing him another 5 mg in the morning as well as in the evening. Supervisor E concurs, and said that in her experience an insufficient dose of a drug like abilify can exacerbate rather than alleviate behaviors.
So I have given Leelo a morning dose of abilify today. I hope it helps, hope we have an even slightly more sociable and settled Leelo by the time relatives arrive on the 19th.
And in the continuing theme of whimpers rather than bangs, I dutifully record that this is my 2,000th blog post. Woo-fucking-hoo. I had certainly hoped Leelo would be a happier, better adjusted boy by now. Maybe by post 3,000. If we make it that far.
TweetSee if you can figure out why snowflakes like this make my kids extra-happy:
(All hail exacto knives!)
And in very sad news for my internal teenage self, the Vespa I won in a raffle has gone off to live with someone who will actually ride it:
But in happy news for Leelo, Therapist E and her Boredmaker software came over today, and we cooked up the following icons to supplement Leelo's visual schedules. I hope hope hope they help help help:
get toilet paper
put on shirt
put on underwear
put on socks
put on pants
put on jacket
put on hat
bean bag chair
walk together [group]
sit on stool
put clothes in hamper
take a bath
dry with towel
put on pajamas
put on pullup
take off clothes
music [CD image]
sit on couch
sit on chair
clean up [put books away]
clean up counter
turn off light
turn off water
TweetLeelo has hit the age/grade ceiling in his current K-2 placement, and so will need to move on next year. Seymour and I are visiting classes, and began our quest with the 3 - 5 across the hall from Leelo's current classroom. Here are my notes:
Teacher C seems cut from the same cloth as Leelo's Teacher M: Calm, unflappable, kind, and knowledgeable.
The classroom seems like the logical next-step extension of Teacher M's class. It is arranged in a similar fashion, with the same kinds of stations and visual schedules. However as these are older children the schedules are much more text-based than in Teacher M's class. There appears to be more academic learning going on. It is of course (also like Teacher M's) a behavioral class, and most of the students are autistic.
Teacher C mentioned that her goal is to get the kids' behavior managed, so that they can transition to a less-restrictive environment. To that end, she has two higher-functioning students who will be transferring to less-restrictive classrooms in the immediate future.
Because the students are larger than those in Teacher M's class but have similar behaviors, Teacher C tends to ask for male aides. She says that the staff changes frequently, much like in Teacher M's class (e.g., only three of Teacher M's paras stayed on from last year).
Not all of the students require 1:1 aides. The current ratio is five aides for eight students.
All of the staff are trained in CPI (http://www.crisisprevention.com/program/nci.html) for the managing of violent behavior. If the students act out, Teacher C has them take a cooling-off break in the fenced play yard outside the room. If their behavior was a result of an attempt to escape a demand, they will be returned to task after the cooling off period.
Teacher C's class has weekly field trips and outings. They also attend campus dances. This would definitely give Leelo more social outlets than Teacher M's class.
Overall, Teacher C's class seems like a reasonable fall-back plan if a more appropriate third-grade classroom for Leelo is not identified before the fall.
TweetI wonder if I should keep Project Manager on the list of active skills on my resume. Consider the hours of phone calls, coordination, discussion, and synthesis that went into this email to Leo's team:
Wanted to keep you abreast of how things are looking for Leelo's home program. Please let me know if I've gotten anything mixed or wrong.
As per a discussion with Supervisor M yesterday, it is in Leelo's best interest to keep weeknight hours as respite only. Leelo is very tired after a long day of school and on the bus, and does not do his best learning at that time. Best to transition his ABA program hours to the weekends. [It is my hope to reduce these hours if we can get Leelo's behavior under control. Right now safety is a huge concern.]
I just got an email from Therapist Y saying that he is transitioning to a new job and will no longer be able to work Thursday nights, effective immediately. He may be available to help with extra hours during the Winter break. (Anyone else who would like to work extra hours, please let me know!)
Therapist R is transitioning to full-time school in the new year, and at that point will only be working Wednesday nights.
Therapist A is willing to consider working Monday late afternoons instead of weekends, starting in the new year.
Therapist M is available to work Friday late afternoons (except one each month), starting in the new year.
Therapist V was recommended by Therapist A and her good friend SLP R. Therapist V is a six-year 1:1 aide veteran of a local intensive autism center. He would very much like to take over Leelo's weekend ABA programming as well as do respite on Tuesday nights. As he also has just taken a new job, he will call the next few days to let me know which days and hours he actually has available.
Please let me know if you have any questions.
As usual, things are nuts here. We're living an iceberg life, with only a fraction of it surfacing on this site or indeed in IRL discussions. But in general we are good, always sleepy, and never bored. Not a horrible mix, necessarily.
TweetMali has a thing for the Jenns in our life. She really loves asking me to txt them for her.
Usually I type in her dictations, such as "Tell Jenn I said 'Hi' and that I am Dr. Alice Bunny!" or "Jenn I want you and Sophie and Willow to come over today and I love you and I miss you."
Yesterday she wanted to text a Jenn while I was sitting at a table in a booth at our local winterfest, realizing that registering for the National Bone Marrow Donor Registry took more than sixty seconds. Since I needed her to sit still while I filled out the three pages of information that would give the registry the best chance of being able to find me for the next twenty-two years, I opened my phone's keyboard and a text window, and told her to have fun.
She asked me where the N and the K buttons were. I showed her how the Back and Space buttons worked. I told her that the "juh" sound she was looking for in one of the names was a J, not a G. And that was it. She typed these four names, with spaces, independently, exactly as appears below:
Gen kate shon jak
(That would be Jenn, Katey, Sean, and Jake.)
The funny thing is, she's just now starting to be able to form written letters, so I didn't consider that she was nevertheless intellectually able to write. Her noggin is churning at a pace not matched by some of her fine motor skills. It's fascinating. And you'd think, after so many years of trying to find the best ways for Leelo to communicate, that I'd have more consideration for such matters.
Guess I'll let her spend more time at the keyboard.
TweetFor those of you who, like me, live in holes and so may not have experienced this transcendent deliciousness:
Bible literalists, if you're going to use The Book to justify your condemnatory stance on homosexuality, then please also consider selling your daughter to me. The Bible says you can; Leo's team, Seymour, and I all agree that we could use some more help around here; and a slave would generate none of the paperwork necessitated by IHSS. Thanks! *Cough*dickheads*cough*
TweetYesterday's mail included a Jenny McCarthy article from a well-meaning friend of my mother's who wanted to know my opinion on everyone's favorite Warrior Mother.
I emailed her back, and told her that Jenny McCarthy's son is not like my son. And when people assume that our sons are alike, that I haven't tried to "save" my son, it makes me angry.
I wrote that basically, Jenny's son won the lottery, and Leelo didn't. So, of course there is some jealousy there, because who doesn't want to hit the jackpot? I want Leelo to feel comfortable in his skin, like her son. I want him to have the ability to tell me what he's thinking, what he wants, what would make him happy, what would keep him from being so frustrated and anxious all day long. But I am not bitter or resentful about Jenny's son's development, because I have observed the developmental trajectories and family efforts of enough children with autism to know that Jenny lucked out, that she got a kid with a variation on autism that is nothing like Leelo's.
But most lottery winners know that their good fortune came through luck, and they do not go on national TV telling other hopefuls how they, too, can be mega-winners. They do not ignore researchers who tell them that while there may be a system for winning the lottery in the future, right now all we can do is keep playing.
I don't even begrudge winners like Jenny for making more money by telling their own story. We all have that right. But she should know better than to exploit desperate wannabe-winners by selling or promoting products that will help them win, too. This is carpetbagging, this is peddling snake oil, and -- unless she intends to pull a Paul Newman and donate proceeds to families still struggling with autism -- this is vile opportunism. And it disgusts me.
TweetSeymour created these mangatars of our family for our annual (excepting last year) holiday communications. He did a splendid job with the details, as those of you who are IRL friends can attest.
Meanwhile Iz is sad that I forgot to put out our Advent box and its twenty-four drawers of tiny treats. But she assured me that missing the first three days was not insurmountable, and that I should set it up today. I told her I'd think about it, if she swore not to tell her sister that it was me, not Santa, who finds all the perfect little gifties that light up each Rosenberg December morning.
TweetSlightly polished rough draft from a few days ago.
Leelo's first ten days on Abilify have been rough. Its sole benefit has been soporific -- we watch in disbelief as Leelo gets so sleepy that he puts himself to bed, earlier than usual (i.e., at his actual bedtime). Seymour pointed out that this drug may be completely altering Leelo's perception of the world, and we need to give him time to adjust to how the world now seems to him.
Aggression/self-injury. I don't think these incidents have increased in frequency, but they have increased in intensity. When he loses it and goes after someone, he *really* goes after them. There's no bluff or intermediate tapping; he goes for the full-out assault, for instance getting a bead on Mali from across two rooms, going after her much faster than I can catch him, and cornering her. This includes him slapping his own head on both sides when he's frustrated, usually because he's been asking me to eat all day long every day. When I say no, it's not time right now, or try to redirect, her starts smacking his head so hard that he has bruises on his cheeks.
Those bruises have never happened before, and it is unbearable to witness. This has nothing to do with me getting him to eat apples -- he does that voluntarily and it seems to have fit into his routine seamlessly. I demonstrated how good he is at eating apples (veggie booty reinforcers after each bite, but still) to Therapist R, who came for two hours this afternoon [Friday 11/28] to save my sleep-deprived butt after Leelo woke up at 4:14, and Supervisor E, who dropped by for an hour to meet with me and discuss how things are going with Leelo's home routine, eating, behavior, visual supports, etc.
I have to consider that even though Abilify has the potential to increase his appetite, he is also out of school and mostly just with me right now -- and as much as I am trying to keep him entertained and busy all day long, he is a difficult boy to keep busy and entertain all day long. There are gaps. And he doesn't like the gaps, so I think he immediately thinks to fill them with something he likes to do and is good at: eating.
Dr. R, his new psychiatrist, says it sounds like the Abilify is wearing off by morning, and we could put him on 5 mg 2x day -- but it makes him so groggy I don't think it would be good for him to be at school in that state. And we would like to see him have one completely routine week on the Abilify, a week without colds or holidays or birthday parties or sisters and dads going away for several days. Let's see how he does for at least one routine week and then start considering tweaking, adding in Claritin, etc.
Seems to be back on his game in terms of focusing. For the last two weeks he had a really hard time focusing and even getting his own underwear on independently. But he also had a cold. This week his cold is gone and he is getting himself fully dressed down to his socks, independently and frequently without any prompting other than me leaving the clothes out where he can find them.
His language is good, seems to be increasing. I don't think this is solely the Abilify as according to his daily record he started using this kind of language a few days before we started grinding up antipsychotics and putting them in the peanut butter of his dinner sandwich. He may just be going through a language spurt as he has in the past. But is very cute and he has been incredibly engaged and social. Examples:
- "Want to go outside with Godfather M"
- "Hi, Supervisor M!" (unprompted)
- "Hi, Therapist R!" (unprompted)
- "Want to kiss Elizabeff, want a kiss, Elizabeff"
- (pointing at my friend Roo whose name he didn't yet know): "Jump with me" [on the trampoline],
- "Want to go play outside"
- "Bring the green straw"
- "Want to play outside with Merlin" (who was over for Thanksgiving)
- "Want to jump [on the trampoline] with Ki"
Nice to see some niceness amidst the grueling grind, but the lack of sleep is killing me. Doesn't seem to matter if I push his dosage time back, if it's at 5:30 or at 7:15. Goes to bed by 9 PM and is up around 5:30, sometimes as early as 4:15, sometimes gets up for a spell in the middle of the night. Regardless he seems to be sleeping for no longer than eight hours every night. With no school and zero to minimal respite and Seymour away for several days, having him sleep the same amount of hours as I'm supposed to is killing me. Especially since Jennyalice and I published Can I Sit With You? just two days ago, which means I've not had enough sleep for most of the week already due to my work day usually starting around 9:30 PM.
Not a whole lot going on to convince me that medicating Leelo was the right idea, but I'll give it another week.
TweetWaiting at Coffee Bar in San Francisco (mmmmm!) for a Leelo team meeting with Seymour and Supervisors M and E to discuss how completely fucked up Leelo is right now, and how horrible our lives are and how depressed we all are!
Who wants to bet that I'll never get around to writing up what we talked about?
TweetThis week's Can I Sit With You? Story is The Weirdest Kid in the World, by Mike Adamick of Cry It Out: Adventures of a Stay-at-Home Dad and StrollerDerby.
Mike's is one of the most painfully funny stories in the new Can I Sit With You Too? book -- a book which tops your holiday gifting list this year, yes? (Don't forget that lulu.com shipping costs go down down down when you purchase in bulk.)
Mike's participation in Can I Sit With You? is a particular treat for me, as his guide to the Westin St. Francis area was one of my favorite parts of BlogHer08 San Francisco. And I suspect I'm not alone.