Ski Bum, by Jennifer Myers, is for anyone who ever got invited on another family's expensive vacation, and found themselves too intimidated to speak up for their own needs. Enjoy.
Education Series Offered for Parents of Young Children Diagnosed with an Autism Spectrum Disorder:
Enrollment under way for individual sessions or 10-week series, starting October 2
The Center for Autism and Related Disorders (CARD) at Packard Children's Hospital is offering a 10-part educational series for parents of young children (1-5 years) newly diagnosed with an Autism Spectrum Disorder (ASD).
This series has been designed to provide parents with information about ASD diagnoses, treatment, and services. Subjects covered in the 10 sessions, which begin October 2, include the basics of behavior management, how to navigate the service system, research updates, and home strategies for skills building and stress reduction.
Registration is available for individual sessions or the entire series.
Date: Thursdays beginning October 2
Location: 401 Quarry Road, Conf Room 2209
To register for individual sessions or the series
The cost is only $5 per session.
Please spread the word to any families who might benefit.
Posted by Shannon Des Roches Rosa at 12:34 PM
Got Santogold. Sounds good to me, as I like M.I.A. quite a lot when she doesn't suck. Also not rated explicit, so I can let Iz have a listen, too.
Do you have a favorite song at the moment?
What is it like to live in L.A. right now, culturally and politically? Many of my Westside friends seem quite clueless beneath the gloss of their lives. Not that anyone likes to face a less-than-glossy reality.
How are things in general? I am waiting for the septic tank truck to come, so that my neighbors and I can thrill to the smell of raw sewage. Better fouling the air temporarily than backing up the drains.
Right now I am working on our second Can I Sit With You? collection and trying to get enough sleep. Kids are 50/50 fun/pains in my ass. Seymour is at a conference in Jackson Hole. I almost hung up when he called to say that the Tetons are beautiful, the weather is perfect, and the sky is blue blue blue. My brother James is at the same conference, and I almost texted him with a request to spike Seymour's drink with something emetic. Almost. But I've had some good trips this year, too, so I can't really complain long term, only when under siege*.
Hope you're well,
P.S. Shoe recommendations? Leelo's fat little feet need a special pair of expensive Japanese shoes. Expensive for kids' shoes, not expensive in general. He likes to drag his feet on the ground and has rubbed the toes clean off of two pairs already.
*It took Leelo three hours to get to sleep last night. I think it was a combination of his dad being gone, my having changed the sheets on his bed, and his having taking a bath downstairs rather than his usual upstairs. It was bad, with the hitting and screaming and crying and scratching. The hullabaloo was so extreme that I almost expected CPS to show up, which would have been ironic as the only person being physically abused was me. The girls got no bedtime stories, and weepily sniffed themselves to sleep (ow, my heart, it has two arrows stuck in it). Eventually Leelo calmed down with a system reset: He changed out of his jammies into his regular clothes ("Black underwear! I want the black underwear!") and we watched an episode of Panda Go Panda!. Then we went back upstairs, we changed his sheets to "The Blue Da-da-da!," put his jammies back on, and he sailed straight into dreamland.
Posted by Shannon Des Roches Rosa at 11:20 AM
Mali: "No, thank you."
Me: "Would you like some yogurt?"
Mali: "No thank you."
Me, getting grumpy: "Well Miss Princess, what *would* you like for breakfast today?"
Mali, brightening: "I would like an English muffin, toasted, with Gwendomama's homemade jam, please!"
Me, whipping out the jar I wheedled off of Gmama during this past weekend's Awesome Birthday Convergence because my girls laid waste to the two previous jars and spent days wailing for more: "You mean THIS jam?"
Mali: "Woo hoo! Wheeee! Yes PLEASE!"
Posted by Shannon Des Roches Rosa at 1:47 PM
This story is not about having the wrong clothes or being the new kid who didn't fit in. This story is about having your friends and neighbors turn against you during war time. This story is about how thin the membrane around a community can be, when stretched by the wrong hands:
"We felt particularly committed to support our troops, those young men who were so far away, fighting in a frozen and inhospitable land. I worked very hard with my small and unskilled hands, carried by a feeling of love toward my country, which filled me with pride. But that day, a friend who I used to play with on the playground, and knew my family well, (my father was their family doctor) stood up in front of the others and said, 'Anna cannot work among us! She is the daughter of the enemy, therefore she is an ENEMY of our soldiers.'"The Banality of Evil, by Anna Dalprato (translated by Lea Cuniberti-Duran).
Anna was nine years old at the time of this story. My own daughter is nine years old, and she will be reading this story when she gets home from school today.
Posted by Shannon Des Roches Rosa at 11:56 AM
I will always cherish the memories from those trips. July snow at Crater Lake. Convincing my dad to eat MacIntosh Toffee, which pulled out one of his crowns and sent him into nearby Grand Forks for emergency dental work. Abusing our parents' patience by obsessively re-playing our eight tracks of Dreamboat Annie and Living in the USA, and later our cassettes of Freedom of Choice and Beauty and the Beat. My dad spending all three weeks of our Camp Richardson vacation lying on a lawn chair under the fragrant pines, with his back in traction to help recover from a fall through a factory skylight. My mom handing me my own copy of Jane Eyre, touching off my life-long love affair with the twin powers of skilled storytelling and righteous indignation. My two younger brothers' crusade to trap and release every squirrel in our campsites. My mom not remembering until twenty minutes on the road that she'd forgotten to pay for gas in a small B.C. town, turning our mobile behemoth around, and encountering the squad cars that had been sent after her.
I will also never forget the awful taste of the powdered crud that was our only camping milk option. Hack. Spit. Ptui.
So, while I am not a fan of packaging, I do appreciate products that make sense under specific circumstances. I am grateful that Horizon Organic makes single serving cartons that give a real milk option to sad little campers who would otherwise be stuck with nasty powdered milk. The regular milk doesn't even taste funny. So, yay for Horizon's single serving regular milk. I will pack it along on our next overnighter outdoor excursion, and never again fear my campside morning cereal.
The regular single-serving milk is useful. But Horizon also provides single serving milks in three flavors: vanilla, strawberry, and chocolate. I was prepared to disfavor them all (again, I am packaging-averse). But I also spent many afternoons of my childhood experimenting with Quik, and Horizon's strawberry milk tastes and smells exactly like Strawberry Quik -- except organic. As I am a sucker for childhood sense-memories, I suspect I will be squirreling away a few packages of the strawberry single serving milk. Yay for Horizon's strawberry milk.
I didn't even know I liked vanilla milk until I tasted the Horizon single serving version, but now I will make sure that there is vanilla milk on hand, for those times when sadness descends and a sixth cup of coffee just won't do. Yay for Horizon's vanilla milk.
But what about the chocolate milk? Well, I know well enough that few people are content with a mere sip of chocolate milk, and I do not need any additional addictions at the moment, so I tested the single serving chocolate milk on my girls.
Iz enjoyed it. Yay chocolate milk, of course it's good, HELLO, Mommy.
Mali, however, will not normally drink milk or even touch it unless it is dampening her cereal. But she thought Horizon's chocolate milk was so delicious that she swore she has always liked milk. She also swears that she will drink it if I put it in her lunch, which made me re-evaluate in favor of the utility of single serving packages. Mali is not as picky an eater as her "I eat only six items" brother Leelo, but she is close. The opportunity to feed her anything different, especially something with a few grams of protein, is always welcome, so yay for Horizon's chocolate milk.
Pictures and video proof of chocolate milking:
Mali trying to put the straw in by herself.
Yes I do like chocolate milk! I do I do! (My mother also wants to show you that I get healthy meals on occasion)
Iz demonstrates her more mature approach to chocolatey nom.
Please note that anyone who cares to discuss or debate the facts about Horizon can do so at www.horizonorganicfacts.com.
Her detailed notes should give you an idea of where Leelo is, what he is doing, what we are working on, and what his main challenges are. Hopefully there will be some helpful information for families facing similar scenarios.
Note: I observed Leelo in the classroom yesterday, and was impressed by how nicely he was thriving and learning in his well-run environment. Particularly amazing was his tolerance of multiple children screaming in his vicinity, as long as he was engaged and on-task.
He was still stimming and taking off shoes whenever possible, plus acting out whenever he didn't like what was going on. Though because of his extremely well-structured and 1:1 supervised environment, he did not act out very often. As mentioned below, we need to replicate as much of the class structure and visual supports as we can, in our home.
An important goal for Leelo for the past 2 years has been to increase his ability to access instruction in a classroom environment, and to reduce his need for highly individualized, home-based instruction. Since April 2008, Leelo has been attending Playa Azul School for a full day every day, and his home program has been reduced to 2 afternoons per week (total 4-6 hours). He adapted quickly to the longer school day, and the increased learning opportunities occurring at school. At school, Leelo responds to effective teaching strategies and increased learning opportunities in his daily schedule. Leelo is now mastering newly introduced skills at school, while continuing to generalize skills previously mastered in the home program. With Leelo better able to access academic instruction in the classroom environment, his home program has been modified to increase emphasis on leisure skills, independent living skills and chores. His home staff and family are working to integrate visual supports in the home. Leelo’s aggressive behaviors are managed with behavioral interventions based on his Functional Analysis Assessment, and with allergy/decongestant medication. Despite this, aggressive behavior continues to threaten Leelo’s safety and the safety of those around him. Compulsive, repetitive behaviors also interfere with learning.
BEHAVIORAL CONSULTATION FOR HOME ABA PROGRAM
- The main focus of the in-home component of Leelo’s program has been generalization of skills mastered in the school setting, maintenance of previously mastered skills and increasing Leelo’s repertoire of self-help and independent living skills.
- Independent Work: Leelo is able to work on 5 tasks independently for up to 30 minutes. Leelo requires (on average) 0-4 indirect non-verbal cues per activity to remain on task. In the past month, Leelo has begun to choose the activities and put together his work station with one verbal cue per activity. Leelo has also been observed to initiate cleaning up the materials with 100% independence. Next steps: have multiple areas around the home in which Leelo can access his independent work.
- Community Outings: Leelo and the staff working with him in the home go on walks around the immediate neighborhood each session. Leelo is able to put his shoes on with one visual cue. Staff working with Leelo use a visual cue (a picture card that reads “walk together”) to keep Leelo on task and safe. Leelo requires physical re-direction on average 2-4 times per outing. In an effort to increase Leelo’s independence out in the community and to decrease the need for physical re-direction, learning “stop” has been added to Leelo’s program. Instructional protocols for teaching Leelo “stop” include walking in front of Leelo, presenting both visual prompts (a picture card) and verbal cues to “stop” and reinforcing correct responses with social praise. When Leelo does require re-redirection during outings, staff use both physical prompts and the visual prompt to “stop”.
- Visual Supports: The importance of the use of visual supports for all individuals who come into contact with Leelo cannot be overstated. Use of visual supports increase Leelo’s independence and allow him to spend more time engaged in meaningful activities. Also, staff reports strongly suggest that use of visual supports decrease anxiety and the rate of target behavior.
- Functional Life Skills: Leelo has begun to work on setting a place for mealtime with decreasing visual prompts. Staff working with Leelo have identified that he would benefit from learning to make a snack. Increased skill acquisition in the areas of community living and independent work increase Leelo’s ability to function as independently as possible.
- Increasing Tolerance to Foods: A system for increasing Leelo’s tolerance to a variety of foods has been identified (see attached). Currently, Leelo is working on increasing his tolerance to hard boiled egg whites and oranges.
- Behaviors that have been given priority for intervention and behavior support in the home are hitting others, hitting self and repetitive behaviors. While antecedents can be difficult to identify and functions multiple, it is becoming increasingly clear that not being engaged in meaningful activities increases the likelihood that Leelo could engage in target behavior. In other words, when Leelo is actively engaged, he is less likely to engage in target behavior. High risk times for hitting self and others in the home are:
While on the computer (hitting self)
While attention is diverted to another person
When left alone or with no clear activity or task
In the presence of his siblings
- Repetitive behaviors are unpredictable and appear to spike in clusters. For example, Leelo was persistent in placing numbers on a Velcro strip. Staff blocked the behavior and then Leelo would not put numbers on the strip unless staff weren’t available to block multiple responses. The numbers were removed for a period of time and represented several days later without incident.
- Due to the complexity of antecedents and functions, it is important that staff working with Leelo understand those interventions that decrease the likelihood that target behaviors will occur (e.g., use of visual supports and increased engagement).
Emphasis has been on increasing staff use of effective instructional strategies to reduce Leelo’s aggressive behavior and increase appropriate behavior and learning. Previously, Leelo was unable to access instruction in noisy, busy classroom environments. As Leelo’s staff further develops their expertise in teaching Leelo and managing his behavior, the SDC classroom has become the main setting for academic instruction.
Using contingent reinforcement and multiple repetitions: new skills
- Leelo’s teacher currently uses contingent tangible reinforcement paired with praise when teaching new skills. That is, Leelo is praised, and earns short periods with a preferred toy or straw for correct responses. In addition, Leelo is presented with 3 to 5 repeated, consecutive learning opportunities when learning new skills. These 2 strategies are effective and essential for teaching Leelo new skills. Leelo works on new skills during 7-8 minute work-with-teacher times. Examples of skills taught during work-with-teacher include sight-word recognition, one-to-one correspondence, and receptive and expressive labels for emotions. In addition, Leelo’s teacher consistently tracks Leelo’s practice and progress on skills. Mastered independent skills are moved to work-station, so that additional new skills can be introduced. Next steps: Para-educators should be trained to introduce new skills to Leelo during work-with-teacher time; increase work-with-teacher time from 7/8 minutes to 12 minutes per session, at least 2 sessions/day; add social and conversational skills to work-with-teacher time.
- Using effective strategies for maintaining mastered skills
Increasing food tolerance
- At school and at home, Leelo is working on tolerating an increased variety of foods. In both settings, Leelo can put oranges and scramble eggs to his mouth and lips, and is now working on putting them in his mouth. A protocol for introducing new foods has been developed (attached below). Leelo’s parent, classroom staff, and OT work together to coordinate instrution.
- At school, Leelo follows an individualized visual schedule. He has a morning schedule and an afternoon schedule, each with about 10 activities listed.
- The schedule, made with Boardmaker software, vertically displays text (3/4 of card) and a small icon (1/4 of card) beside the text. A name card cues Leelo to check his schedule.
- Upon arrival at school, Leelo typically receives the name card from the bus driver; this was begun to prevent dropping on the floor of the bus when disembarking.
- With the card in hand, Leelo knows to walk to class.
- He checks his schedule by scanning the entire morning’s schedule.
- Leelo consistently checks his schedule when handed a name card, and also independently requests his name card when finished with an activity.
- He consistently transitions to both preferred and less-preferred activities using the schedule.
- He occasionally requests a different activity in response to a less-preferred e.g. in response to circle time he may say “I want recess”, but is able to tolerate the less-preferred activity with a “first circle time, then recess” prompt.
- Next steps: fade out icons on most familiar activities, to increase sight-word recognition.
Leelo independently works on 6 consecutive tasks with 2 to 5 prompts on average. Each work-station session takes between 5 and 15 minutes, and occurs 2 to 3 times per day. Tasks include chore-type (e.g. sorting silverware), academic (matching sight words to pictures, writing name), and leisure (listening to music on headphones, reading story to self). Staff assist Leelo physically if necessary, with little or no verbal interaction. Staff also keep busy with other jobs, to reduce Leelo’s dependence on them during this independent work time. Next steps: rotate work-station location/have Leelo travel to get materials himself; increase emphasis on leisure skills and open-ended tasks (e.g. toy play); increase time spent on work station to 15-20 minutes; consider using choice board so Leelo can help decide which tasks to work on; train all staff to use non-verbal prompts
Aggressive behavior: hitting self, hitting others
At school, Leelo’s aggressive behaviors averaged 4 times per hour this quarter, with a range from 0 to 8. This is an increase from 2 times per hour from last quarter. In general, he hits himself more often than he hits others. At school, hitting self and others most often appears to function to escape demands/noise (other children screaming), and to gain access to preferred tangibles and activities (usually a straw, or outside time). Less frequently, Leelo appears to use aggression to get attention. Occasionally aggression appears to have a sensory function.
Further understanding aggressive behavior for Leelo:
Aggressive behavior increases when he is sick or has physical discomfort (e.g. cut or scrape).
The frequency of aggression may vary across time within a day, as in the graph on 5/1a and 5/1b; during the first hour of observation Leelo hit himself and others 8 times, and during the second hour there was no aggression.
Aggression does not correlate with time of day at school, as Leelo may have a calm morning and have increased aggression in the afternoon, or vice versa.
Aggression does correlate with activities: Leelo continues to have highest likelihood of aggression during circle time, recesses lasting more than 10 minutes, and motor/sensory room periods.
Aggression increases when staff use loud, and/or lengthy directions when working with Leelo, and when staff respond to aggression by giving Leelo a straw or another reinforcer.
Replacement behaviors: requesting a break;
When a break card is visible, Leelo can consistently, verbally request a break from work-with-teacher. He is beginning to request a break in circle time. Next steps: staff should consistently honor Leelo’s request for break during circle time; during work-with-teacher, staff should have Leelo do “1 more”, and then give him a break; breaks should be brief (1-2 minutes), and should entail Leelo leaving the work/circle area, sitting at a desk, and completing a small puzzle; Leelo should return to work after his break is over.
Repetitive behaviors: These may interfere with learning, and sometimes lead to aggressive behavior. Included are: repeatedly sliding finger on surfaces such as the computer screen, desk, visual schedule, and floor, repeatedly matching the numbers on the independent work station activities, and bending the visual schedule cards. These behaviors appear to lessen when Leelo is blocked from performing them, or when the antecedent for the behavior is removed from the environment (e.g. removing the matching component to the independent work).
Straws: Leelo continues to request, chew and manipulate straws as a preferred material. Prolonged time with straws tends to lead to aggressive behavior, and interferes with learning and speaking. On average, Leelo has a straw about 40% of the time when at school. Straw use varies between activities. During work-with-teacher, straws are used as reinforcers for correct responses, for brief 3-5 second intervals. During recess, straws appear “custodial”; something for Leelo to play with during often extended (20 minutes), unstructured time.
Increase rate of engagement throughout the day: Data suggest that Leelo is more productive and engages in lower rates of problem behavior when he is engaged.
Increase use of visual supports across all environments. It is critical that all individuals who come into contact with Leelo increase their use of visual supports. Those who are not fluent in the use of visual supports would benefit from ongoing training and feedback in the use of visual supports.
Track mastered skills for maintenance
Increase work-with-teacher time; have paras as well as teacher implement this
Emphasize training across all staff, to increase consistency in use of effective strategies
Reduce straw use and increase engagement during recess
Ongoing feedback from school staff regarding skills that are ready to be generalized in the home.
Posted by Shannon Des Roches Rosa at 11:26 PM
Please help support SEPTAR, the Special Education PTA of Redwood City (of which I am a founding member) by doing your web searches or setting your home page to:
Simply go to www.goodsearch.com, select SEPTAR as your designated Goodsearch beneficiary, and that's it! SEPTAR will get a donation every time you use Goodsearch to search the web.
You can further support SEPTAR when you shop at Amazon.com, etc. via the shopping area at the bottom of the Goodsearch home page.
Thank you for helping SEPTAR provide our local special needs community with even more speakers, events, and support! More information on the good things we're doing can be found at www.SEPTAR.org.
Posted by Shannon Des Roches Rosa at 1:20 PM
He is doing some crazy verbal gymnastics lately. It's sort of scripting, sort of echolalic, but altogether unique Leelo-speak. It's pretty cool.
Leelo has always loved to have us sing or speak back the lines he feeds us. It's one of the ways he communicates and shows affection and gets reassurance. Lately he has been taking scripts from favorite books and verses from favorite songs, and making them completely his own. He has done this to Goodnight Moon, inserting his own real and nonsense words -- nonsense words when he needs something that rhymes with the first word he chose, but can't come up with a real word off the top of his head. So we have gems like, "Goodnight puppies, goodnight cuppies."
It's amazing to watch, amazing to hear.
He is also playing with the names of all the Thomas trains. Tonight, while all five of us were having quality postprandial trampoline time, he spent several minutes saying goodnight to all the engines he could think of. Then he went through the entire list again, changing the starting sound of each name. We all said goodnight to Seter Sam, Suncan, Dercy, etc., as ordered. Very amusing.
Probably the part I like best is his singing. Tonight I tried to have him watch some YouTube videos post-bath, pre-bedtime books, to help calm him down. He was not impressed by my choices, because he wanted to provide the evening's music himself, with "There's a Little Wheel Turnin' in My Heart." Which he has sung before.
EXCEPT he incorporated something different from his environment, into every verse.
Shia the cat walked by, and Leelo sang, "There's a one cat meowing in my heart, miaow miew, there's a one cat meowing in my horn." (Heart and horn are interchangeable for some reason.)
Then he looked around for something else to sing, locked onto my most prominent facial feature, and sang, "There's a big nose honking in my heart, honk honk, there's a big nose honking in my horn."
For his final verse, Leelo chose something from the next step in his bedtime routine, and sang, "There's a daddy reading in my book, book, book, there's a daddy reading in my book."
Leelo was very snuggly, very affectionate, very present during all the encounters above. Yay Leelo. I love our intense interactions. Verbally, you're going places. And I can see the big wheels turning, the ones that are going to take you wherever it is you're going.
For contrast, consider me thinking I could take all three kids to church by myself this morning. Because I have the power of optimism!
Note to Myself Past: YOU CAN BE A REAL DUMBASS.
Today was the first day of Iz's Religious Education class. Exposing her to our congregation's pan-theologic, non-judgmental approach is important to me, and I did not want her to miss anything. I also didn't want Seymour to miss the mountain bike trek to which he'd been invited, and which was scheduled for the same slot as church.
I calculated the risks, and decided they were acceptable:
- I've been having great luck with supplying engaging activities to keep Leelo calm in public, and thought perhaps my son would be able to tolerate the five minutes from the welcoming until the children were sung out to their classes.
- If Leelo found five minutes of service intolerable, then we could leave. Iz knows half the people in the congregation, so she wouldn't feel abandoned, and she also knows the routine for following the other children from the sanctuary to the classroom. Leelo and I could slip out and deposit Mali in the nursery. Then Leelo and I could find a nice quiet corner for his activities, or we could walk around the block.
- When the service finished, I could pluck Iz from her class lickety-split, and her siblings and I could all leave the building before its narrow hallways and small rooms became crowded with the ideologically sated.
- If something went wrong, then surely someone might help me, especially after I posted my essay on Being a Friend to Families of Children With Special Needs to the congregation's Yahoo Groups list and was sent many warm, supportive responses.
Thirty seconds into the service, Leelo was done. He had completed a lacing card, had no interest in anything else in my backpack, and announced his displeasure with blows and howls. Mali was also done, as evidenced by her proclaiming loudly, "I don't like this place."
Like fools, we flew. My heart, it sank.
Mali was happy to play in the nursery. When the children filed by the door as they were sung to their classes, she decided she'd like to try join the pre-K class. Off she went.
Meanwhile, Leelo and I wandered through the building, and found that it was entirely devoid of quiet corners. The Religious Education program had expanded over the summer, and needed every last chair for its participants. I felt happy for our growing congregation, and stressed that there seemed to be no physical space for us in their building.
It didn't feel right to leave and run errands, so Leelo and I trudged back to the nursery. We sat down at a table across from a couple of toddlers, and we all did our respective activities until Leelo was done. Which he indicated by thwacking me, hard, with an open hand to my chest.
There was still half an hour of service left, so we took a walk around the block. We ran across JP, which is always a treat.
When we returned to the nursery, Mali was there. She'd been bounced for reasons I could not ascertain, but which likely had to do with the defiance that has been getting her into trouble at her preschool. Or maybe they didn't realize that she qualifies for pre-K, that she'll be going to kindergarten in Fall '09. It didn't bother me that much, especially as her presence simplified my extract-and-escape logistics by one factor.
I didn't want any toilet issues to complicate our planned smooth exit, so I took Leelo to the potty. And realized that his last thwack combined with my scoop-neck tank top meant I had been parading around the neighborhood and building with a bright red handprint in the middle of my chest. Lovely.
Finally, service was over. I grabbed Mali's and Leelo's hands, and trotted to Iz's classroom.
She wasn't there.
I did three circuits of the warren-like building and classrooms, getting increasingly panicky as the number of people in the hallways and rooms increased, and as Leelo's unhappy noises escalated. As my eyes got wilder and my voice shakier, I asked several friends and acquaintances if they had seen Iz. None of them had. Even more surprisingly, none of them offered to help me find her.
Eventually -- and thankfully before Leelo's internal volcano erupted -- I remembered that Iz sometimes likes to climb the tree in front of the building. And that's where she was. And that's where I lost it.
I was so relieved to find her, had been bottling up so much stress from the beginning of the service until that point, that I started crying. Which was mortifying -- some UU's are pity vampires and I did not want to attract even more of their attention -- but got Iz down out of that tree immediately. A man that I didn't know approached and kindly asked if I was okay and if he could do anything. I told him that I was just having a bad morning. I hope I remembered to thank him.
Iz gave me her profuse apologies, which I accepted, and we all walked back to the car.
Although overall Leelo did fairly well during our botched church adventure, he won't be seeing the inside of that building again, not anytime soon. I'm not even sure I can show my face for a while.
In hindsight, I realize that I didn't ask anyone if they would help me find Iz. I really can't be disappointed in people for not doing what I would do, if I can't even point out what needs doing.
Leelo had a crappy day overall until the after-dinner magic time described above. If I had been home alone with him and the girls all day, I would have sunk very low indeed, and might not have been able to appreciate the wonder of Leelo's imaginative and clever verbal play. But thankfully Seymour sent me out for a few hours so I could work plus discuss things CISWY with the gracious yet also overwhelmed Jennyalice. I got a break. And because of that break -- only because of that break -- I was able to return home and resume the real work it takes to co-parent my three kids.
This time, I'll let you decide. Am I lucky?
Posted by Shannon Des Roches Rosa at 12:25 AM
Should I have thought, "Damn it, I was up working past midnight," or "Hurray, Leelo was clean and dry, and I'm so lucky Seymour and I trade off so that I don't have to wake this early every morning"?
Leelo used the toilet, got himself dressed, and helped me do some laundry.
Should I have thought, "I do at least two loads a day and it doesn't make a dent and some day they will find my body buried under a mountain of dirty clothes," or "I'm amazed at all these things Leelo can do, he is getting so independent and helpful"?
It was still only 6 AM, so we drove down the hill to get a donut for Leelo and coffee for me and Seymour.
Should I have thought, "If Leelo wasn't bolting so much right now, we could have gone for a neighborhood walk and watched the sun rise over the Bay," or "I am so lucky to live in a city with a drive-through coffee bar that is open this early"?
We arrived home and found Seymour sitting on the stairs waiting for us. I passed Leelo off to him and went upstairs for my bath and a few pages of weirdly wonderful Un Lun Dun, then went back downstairs to co-finish up getting the three kids ready and out the door. I drove the two girls to their two schools, and brought Leelo back home to wait for his bus.
Should I have thought, "Why can't at least two of my kids go to the same school?" or "How convenient that we have no school drop-off conflicts, and how great that a bus comes right to my door so that I don't have to drive Leelo to his school twenty miles away"?
Then I busily researched my bank records, as Mali's school staff had informed me during dropoff that they couldn't find record of our payment for this school year. After a few minutes of "What-if-I-didn't?" panicking over having to pull Mali out of the not-inexpensive preschool I thought I'd pre-paid so as to get a discount, and which our current finances would not re-accommodate, I found both a copy of the check and the statement proving it had been cashed. IN DECEMBER 2007.
Should I have thought, "How could someone lose track of a check that large?" or "Even though much of my life is chaos, at least I have a rudimentary filing system for our finances and can find everything quickly in an emergency, and thank heavens I don't have to go back to the co-op nursery school salt mines"?
A bit later, Leelo's neurologist called, in response to a call I'd put in earlier that morning asking if she was the right person to talk to about Leelo and his aggression and meds. She said she was willing to try putting Leelo on Abilify.
Should I have thought, "Hell no, that is a more intense drug than we'd like to start with, plus we have relatives who developed tardive dyskinesia from similar psych meds," or "I'm so glad Leelo has a pediatric neurologist who responds to queries so quickly"?
I spent the morning editing and re-editing and re-editing.
Should I have thought, "Why do I ever try to do real writing when the process is so painful?" or "I am so excited about getting a story published in a for-real book!"
Then it was time to pick up Mali, and Iz, and bring our eldest home for her Spanish lesson. As Iz demonstrated her ability to whine bilingually, I got a call from Leelo's bus dispatcher. Leelo's bus, with its eleven special needs children, had broken down on the freeway just south of his school. By the time backup busses arrived to transfer the children and take them home, Leelo's body had given up and he had had an accident. So of course he immediately took off all of his wet clothes. The bus drivers are accommodating people, but they could not put Leo on another bus while he was nude. Could I come get him?
Should I have thought, "This is blowing the busiest afternoon of our week out of the water! What would they do if I wasn't available?" or "At least I'm available to pick him up ASAP, and so is Seymour if need be."
I spent the entire drive there unsuccessfully trying not to cry about how freaked out Leelo might be, and trying not to think about a panicking Leelo turning the bus into a poop-strewn monkey pit. And panicking myself due to nasty rush-hour traffic that never let me drive faster than 40 MPH.
I pulled up behind the bus, which was on the shoulder of a very busy exit, and hopped on to find Leelo sitting beatifically in a puddle rather than a pile. I quickly dressed him in the clothes I keep in my car, apologizing all the while to the bus driver for her inconvenience. She said not to worry, she has been working with kids like Leo for years, nothing surprises her, and the cleanup did not bother her. She also said that she's never had a problem with Leelo before and knew that these were not typical circumstances.
Should I have thought, "I can't believe this fucking happened," or "This isn't Leelo's most dignified hour, but he is just fine, and so is his very kind bus driver"?
I whisked the kids to Leelo's favorite restaurant for a naan bread treat. Mali fell asleep on the way there and was very whiny when I woke her up for dinner. The waiter swiftly distracted her and Iz with some pink lemonade, but her moaning upset Leelo and he tossed off some loud vocalizations, then banged on the table once or twice. Overall, though, he was a very good boy and played calmly with activities even when nearby diners were loud.
Should I have thought, "Going out to dinner with an autistic child and a preschooler can be so difficult," or "Leelo is amazing. On a good day he will calmly play through an entire meal, as long as I bring activities for him."
We then dropped Iz at a local school for soccer practice. Leelo played on the playground nicely for a bit -- but after a few minutes told me that he "had to go poo-poo." There were no unlocked facilities at the school so I told him we'd have to go home. And he held it, for the walk off the field and the fifteen minute drive home.
Should I have thought, "What kind of people organize soccer practice for ten teams on a field with no toilet facilities?" or "I can't believe Leelo was able to avoid an accident when I asked him to. He is really making progress with his toileting."
He was a good boy for the rest of the evening, for me, and for Seymour who kindly took over most of the bedtime bathing while I soothed myself out of shell-shock with more laundry.
Leelo fell asleep immediately due to his long and exciting day, but the girls as usual decided that sleep is for the weak. Seymour took on the protracted task of enforcing their bedtime while I went downstairs to work some more, and handle correspondence.
I found an email from Supervisor M in my inbox, in which she kindly but firmly stated that we have not actually tried all the behavioral methods she recommended for dealing with Leelo's aggression and anxiety, and that we need to implement full-scale visual schedules at home. She suggested I go to his school for an observation, so I could witness the magic of Leelo and visual schedules.
Should I have thought, "I do not have the mental bandwidth to use visual schedules for Leelo all day long, it will take over every last interstice of my life," or "Leelo is so fortunate to have a program supervisor who is also his dedicated advocate, who never stops fighting for or supporting him. I will redouble my efforts"
Afterwards I watched about five minutes of crappy TV before falling asleep on the couch. I had no more thoughts, theoretical or otherwise.
As you may have guessed, I entertained each and every "Should I?" above. Should I have told myself that I was having a nasty, black day indeed?
I could have. But I chose to focus on the positive, especially where Leelo was concerned. He could have had a fuss on the bus, at the restaurant, and at the park, could have caused a lot of hardship for himself, me, and his driver--but he didn't (except the inconvenience of stripping).
I am proud of the way my son handled himself yesterday. I should remember it as a GOOD day.
Posted by Shannon Des Roches Rosa at 12:17 AM
But hey, check out Wombat's picture of sorta-our cat Lucy scavenging Mexican food from pool party plates:
Posted by Shannon Des Roches Rosa at 5:30 PM
Then Leelo said, "Look at the stars?"
And they did. Leelo even pointed out a few, counting them as he went along.
These last two months have been hard, not just for us but for almost everyone I know. Really, really hard. So I am always grateful when one of our kids reminds us why we parent, shows us the joy and wonder we wouldn't experience otherwise.
Posted by Shannon Des Roches Rosa at 12:11 AM
Daily Kos covering of the RNC arrests, riot-provoking, and general police state brutality. Courtesy of SJ.
Remember that inaction kills slowly, but completely.
Posted by Shannon Des Roches Rosa at 10:37 AM
Ep sent this Jon Stewart clip to me after I spent the day snarling in disgust over hypocritical Republicans. She wrote:
"He has some good before and after clips, eg. Bill O'Reilly on teen pregnancy (the parents are "pin heads") and after (it's a personal choice). Also some good before and after Karl Rove sneering at a Democrat for being a governor for only 3 years and being a mayor of a small city before that - and now it's good enough to be vice president. And Ms. Palin herself on the topic of crying "sexist." It will make you feel better!"
Posted by Shannon Des Roches Rosa at 9:02 PM
Iz is starting fifth grade, Mali is starting her last year of preschool, and Leelo is now in second grade. I can't believe what great big children Seymour and I have.
They are happy to be off to school, and I'm happy to let them go, as it has been six weeks since the three of them have all been out of the house at the same time. Much as I adore them, I'm off to chip away at my brain and see if there's some sanity left therein...
Posted by Shannon Des Roches Rosa at 10:09 AM
It was a ninety percent lovely day, and I tend to round up, so that makes for a positive overall. We took Godfather Michael and all three kids to Hardcore Organic Coffee for Mali to panhandle apple juice off easy mom-looking marks; to the farmer's market for Iz to taste test olive oil, cheese, and Asian pears and experience general foodie awesomeness; to duck-pondy Libby park for serious Leelo-friendly active playgrounding; to Earth Kids for *sigh* one new school outfit each (for less than $100 total, that Waldorfy oasis has the best sale racks for unique kids' clothing in the region); and tied our day up at Willow Wood Market for polenta-based foodgasms and well-earned libations.
Leelo only hit me hard enough to make me cry once. I have no idea what triggered his attack. He was a patient, playful, and cheerful boy for the rest of the day.
Regardless of my general happiness with our excursion, Leelo's aggression and violence are no longer tenable, are no longer behaviors I feel we can manage, well, behaviorally. Seymour and I talked on the way home, and we both feel it's time to pursue medication for Leelo's anxiety/self-injury/unpredictable aggression and violence. Yesterday his blow "boxed" my ear and I lost hearing for five minutes. I can deal with that. But I can't stomach the possibility that he might seriously injure me, himself, or someone else. When Leelo attacked me yesterday, it was in public, in front of a group of happy coffee-goers. The shock on their faces shocked me right back. I'm used to Leelo's behavior, can mentally compensate for Leelo's behavior. But the reality is that his behavior has become dangerous and very much not okay.
I know other people have traveled the meds vs. aggression/self-injury route before. But I would appreciate hearing from anyone who has personal experience or a good information source.
I'll be calling Leelo's neurologist for a consult tomorrow morning.
Posted by Shannon Des Roches Rosa at 8:41 AM