the adventures of leelo and his potty-mouthed mom
5.11.2008
Happy Mother's Day
To each and every over-stressed mother out there, whatever the nature of and numbers in your herd may be. Today I want you to:
- Do something for yourself
- Check one big item off your to-do list
- Cut one other item loose, and be done with it
Here are my own choices and recommendations:
DO SOMETHING FOR YOURSELF
I plan to ask Seymour to take Leelo and Mali this afternoon while I watch Singin' in the Rain with Iz. I will not feel guilty, because spending Sunday afternoons watching musicals with my family is a parenting dream that doesn't usually get to come true. Leelo dislikes musicals and needs constant supervision, and the only tube-viewing Mali and I agree on is Kim Possible. Lazy Sunday afternoon movie-watching does not happen, and Iz's musicals education is years behind where it should be. (Note: Must remember to buy kettle corn.)
If you don't have the resources to do anything for yourself, be creative. Do whatever it takes to get some time for yourself. Tell -- or imply to -- your partner that you're constipated or otherwise bowel-compromised, and take off to the bathroom for thirty minutes with a good book. In the middle of the day. Whatever it takes.
If you don't have a partner, then today is the day you should explore community and online opportunities for connecting with other parents. Find out if there is a local parenting or mother's group. Browse Yahoo! groups for organizations that appeal to you. This can be a real first step towards making friends who will get you, who will support you, and whom you can support in return.
CHECK ONE BIG THING OFF YOUR TO-DO LIST
I am going to a 9 AM yoga class today. And I will continue to attend. Neglecting my physical health is idiotic. I need to be healthier and stronger in the future, as Leelo will only get bigger and stronger.
If you're like me, your to-do list is probably yards long and possibly too overwhelming to write down. For today, pick one important task that you can finish or make significant progress on before you go to sleep. Then maybe tomorrow you can tackle another. And so on and so on. Sometimes, seeing that you can complete that first task is the catalyst you need.
CUT ONE OTHER ITEM LOOSE, AND BE DONE WITH IT
For some reason, I was asked to be on a grant committee at Iz's school. It's been months since that request, and the committee is finally starting to materialize. However, I now realize that I am overcommitted. Tomorrow I will write to the grant committee and bow out. I will be polite, but frank, will apologize briefly, and will not look back.
Please, for today: figure out what you just shouldn't keep doing, holding onto, or promising. End it. Move on. If anyone tries to make you feel guilty, ignore them.
And have a happy Mother's Day.
Technorati Tags: Mother's Day
5.09.2008
Smartypants Leelo and Mali
Today I gave Leelo a new dot-to-dot puzzle. Only six numbered dots to connect, but in a zig-zag rather than the circular pattern he'd previously done. I prompted him, "1 to 2...", thinking he might need encouragement through the whole puzzle, but he took off and completed it independently -- in the totally new and 100% correct pattern, because HE UNDERSTOOD THE SEQUENCE. Huge! I think he is starting to feel a bit better, more resident in his own skin.
A couple hours later Mali was sitting next to me and chattering for five minutes before I realized she was SOUNDING OUT WORDS and reading them. L-E-E-L-O, F-I-S-H. S-H-A-R-K. D-0-G, etc. SHEEIT! I called Seymour over as my witness, and wrote down D-A-D. Mali performed, "Duh-ah-duh ... Daaaad ... Dad!" Seymour then said, "Well, now, Miss Smartypants, why don't you try writing your brother's name?" And she did (!). So, it looks as though mostly neglected third kids still find ways to learn. Mali was certainly very pleased with herself.
Iz, meanwhile, has to choose an instrument for next year's fifth grade music program. I encouraged her to consider the clarinet (compact! She can swing or go orchestral!) but she is stuck on learning violin. (As though with our three cats we don't get enough caterwauling in this house.) But I am glad that she thought thought thought and decided to go with her instinct rather than cave to her mom. It's not as though she chose tuba, like her uncle Chet. (I still shudder to think of the Christmas family road trip to Canada with his tuba strapped to the roof of the car so he could practice over the break. Canadians, of course, are far too polite to confront their tuba-playing American cousins, no matter how out of tune.)
Seymour has an iTouch from work (because he needs to see how his site and its media perform in the iEnvironment) and is playing playing playing with it. WiFi, ooooooOOoooOOOooo. Best teeny interface I've seen so far.
I am more sleep-deprived than usual and it is tingeing my every thought with the grumps. I prefer being cheerful, so, to bed.
Leelo vs. His Giant Car Seat, Sleep, and Food Tolerance
First of all: CISWY Live! in Redwood City: The Videos. Now you can see what you've missed.
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Leelo got put in lockdown today. Car lockdown. Back in the Britax Husky, a five-point harness car seat that accommodates kids up to 120 lbs and is so large that, when installed in the back seat so that he cannot reach/hit his sisters, nothing else fits in that space that normally accommodates three kids. Sigh.
Using the Husky is quite inconvenient, from a logistical/me having to go into the way-back seat to buckle/unbuckle Leelo perspective, so I put off installing it until yesterday. Then Leelo decided to leap out of his regular seat belt seat while I was driving down a 35 MPH street in busy traffic, and started smacking Mali. I almost drove into oncoming traffic. The car seat got installed within the hour.
I thought Leelo would view the Husky as aversive, but apparently he considers it to be a throne. But hey, if he's happy, everyone's happy. I'll go with it.
We've started his sleep study. Every night for the next eight, Leelo will wear a watch-like device that monitors his motion while he sleeps. He had it on when he went to bed last night, but when I went to check on him at midnight (he hadn't pooped before going to bed, so I knew his pants held a late-night surprise), the device was off his wrist. He did not wake up while I changed and wiped him (praise be to you, oh Flying Spaghetti Monster) so I got the device back on his wrist, where it stayed until he woke up at 6 AM this morning.
He started his food tolerance program today, at school. The goal is to get him to eat more than the seven not-terribly-healthy food items he currently eats (whole wheat croissants, PB&J sandwiches, bananas, veggie booty, pancakes, graham crackers, and fruit smoothies), and is one of his nineteen IEP goals for the year. Supervisor M and his Occupational Therapist (OT) were both on hand to assist with the program launch.
Basically, they're using the same approach we use to get him to take his rice milk/vitamin concoction and straight cod liver oil in the morning: Do what is asked of you re: the food, get a reinforcer. The goal is to get him to successfully comply with the each step below (and be reinforced; we're using a bite of veggie booty) many times before moving to the next. Repeat until he eats.
1) Tolerate having the food on your plate without throwing it across the room
2) Touch the food
3) Pick up the food
4) Smell the food
5) Touch the food to your lips (or "kiss" the food)
6) Touch the food with your tongue
7) Take a bite of the food
We're starting with oranges. Since the taste of orange rinds is aversive, the OT recommended that we take those off. Supervisor M called me to let me know that apparently Leelo doesn't hate oranges (otherwise they would have been stuck on step 1 for a loooong time), and that as of this morning he'd already progressed to "kissing" the orange. Excellent.
I figure a kid who takes his cod liver oil straight and unflavored can be taught to tolerate almost anything, with enough patience and persuasion. I wish I had more patience and persuasion.
Technorati Tags: autism, autism blog, autistic, car seat, feeding issues, food tolerance, sleep, sleep training
5.08.2008
Can I Sit With You? Redwood City Recap
Go to Can I Sit With You? for a recap of last night's Redwood City show. Video excerpts to come.
Also, we've received the audio from the CISWY Seattle show and will post it soon.
Technorati Tags: Can I Sit With You, Can I Sit With You?
Mali Bedhead
This cloud of tangles was eventually rearranged into three (NOT TWO, Momma, THREE) ponytails.
Technorati Tags: bedhead
5.07.2008
Loopy Leelo
Can I Sit With You? Live! is in Redwood City tonight. Come, damn it!
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Today I'm not even sure I know who Leelo is. Maybe Sage can tell me, when I take him to speech therapy this afternoon.
There is something going on with Leelo's sensory systems, some kind of input/output jamming signal that our regular Leelo can't break through. He will not comply with any request, is having toilet accidents at school, and is having the shrieking for shrieking's sake and mad giggling fits that I haven't seen in a very, very, very long time and frankly never expected to see again.
Possibly his body is reacting to not having had cod liver oil for four days straight (we ran out), and getting more sugar (cookies and juice) than the usual no sugar. Sweets have historically made him koo-koo-kooky, but we hadn't seen this kind of reaction to the occasional juice box in a verrrrrry long time.
Part of me also worries that he might really be in pain, that his mad laughing fits are equivalent to an injured cat's purring. But I can't think about that too much. Just like I am not going to think about Mali's new, and understandable, habit of screaming in terror any time Leelo gets within five feet of her, once I finish writing this sentence. I will keep them separate.
I tried dosing Leelo with Motrin last night. His weight requires three teaspoons; his temperament made him refuse to take more than 1.5 before he grabbed the cup and poured it down the sink (with really good language, too: "Put it in the sink, Mom."). I guess we'll try the Sudafed tonight, instead.
We're going to start the sleep study tomorrow night. Part of me is excited to think that Leelo might get more help, might get more skills and tools to make one part of his life go more smoothly. I will pursue almost anything that might ground him, or help him feel comfortable, relaxed, and happy.
Though I have to admit I have slight reservations about the sleep study's surveys about Leelo's home life and my own mindset and approach to parenting. The surveys are lengthy and thorough. The researcher mentioned that it is not uncommon for parents of autistic children to be diagnosed with clinical depression after such forms have been completed and reviewed.
My concern: I don't have time to be depressed. I can't have a depression label. I would be too likely to use it as an excuse to step off the speeding freight train that is my life and responsibilities. And then who would take over? Seymour is doing more than his fair share as is. No, I am an adult with adult responsibilities that are overwhelming but certainly doable. Best to carry on and keep busy. And still fill out the forms honestly, sigh.
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Good news: Iz and Violet got into their school talent show. This is good news because they organized, practiced, and auditioned completely independently, during school, and without the help of whatever being the opposite of a stage mom would make me. Icky news: They're singing a Hannah Montana song, which goes to show that while we parents can block our children's primary media feeds, we can't stop lame tweeny gloss pop from seeping into their lives if that's what they crave.
And in why not share everything news: Mali is starting to use the toilet independently. The switch in her brain flipped over this past weekend, and we've had both solid and liquid production but not a single accident since. Some children just need to wait until they're ready. (My mom pointed out, with a only slightly vindictive gleam in her eye, that I refused to toilet train before I was ready, too.)
Technorati Tags: autism, parenting, parenting burn out, potty training, special needs kids, special needs parenting
5.06.2008
Leelo Update: Migraines, Sleep Study
Before I rip into the latest with Leelo, I just want to remind everyone that Can I Sit With You? Live! is in Redwood City tomorrow night. Jennyalice and I are actually reading our stories this time. Please come, and bring your kids. But don't forget to make a reservation. Or introduce yourself.
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Leelo and I saw Dr. M, his pediatrician this morning. Leelo wouldn't let the nurse take his axial (armpit) temperature, which means he's grumpy indeed. He did let her weigh him, though. He has hit 78 lbs which means a gain of three pounds in the last few weeks. Not good. I could hardly lift him onto the examining table, something that has never been a problem for me before.
The point of the exam was to see if he had any visible earaches or congestions/sinus/cold symptoms that might explain what seem to be intense symptoms of head pain from the past few weeks, especially the past few days.
Leelo had totally clear ears. He did not even have fluid buildup. His nose and throat were likewise clear and dry.
So, Dr. M thinks it is likely that Leelo has migraines, given his symptoms and my family history. She also said that he may be experiencing "auras" either from the migraines or the absence seizures.
Here is what she'd like us to do:
1) Try dosing him with Motrin. She emphasized the importance of giving him the correct dose, as many parents tend to underdose and that greatly reduces the drug's efficacy. She also emphasized the importance of treating migraine pain proactively rather than reactively.
2) Stop feeding him goldfish crackers. Cheese can be a migraine trigger. I will send in veggie booty and graham crackers (two things I hope he loves as much as goldfish crackers) for classroom snacks.
3) We can try putting him on Sudafed to see if that will relieve any sinus congestion she couldn't detect (but which she suspected from the way he was getting me to push on his head/sinuses while she and I were talking). We should know whether or not this is helping in three days.
4) If we like, we can also switch his seasonal allergy meds to Zyrtec. This can be used at the same time as the Sudafed. She said that Claritin is not working for a lot of people during this intense allergy season.
She was relieved to hear that we have already been talking with Dr. Cheyenne, Leo's pediatric neurologist, and that we have an EEG scheduled for June 2.
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Also, I just met with a PhD student who is running a research study on autism & sleep disturbances, out of Stafnord (she did her undergrad at U.C. Davis, under one of the founders of the MIND Institute, and did her MA at Brown, including extensive work at their sleep lab). Leelo will be participating, starting this week.
This is a really incredible study. She is collecting data (from me doing extensive surveys, brief sleep diaries, setting up an IR camera recording during sleep, and training Leelo to wear a watch-like device to record electrical sleep pattens) to determine the environmental and physical causes behind any sleep disturbances. She with then identify any problematic factors we might have overlooked, and help us develop a sleep routine, including a picture schedule and a personalized bedtime story book.
The study takes approximately ten weeks, comprising one eight-day period of recording Leelo's sleep patterns, a period of family discussion/sleep training/new routine, and then another eight-day recording period to see if her modifications have been helpful.
She has room for a handful of additional lab rats; if anyone is interested contact me immediately as her window closes soon.
Technorati Tags: autism, autism blog, autistic, migraine, sleep training
5.05.2008
OH HAI DON'T MIND ME
BlogHer 08 Special Needs Parenting Panel: Kristina Chew, Jennifer Graf Groneberg, Vicki Forman, Susan Etlinger, and ... *me*.
Leelo's Progress: The Good Stuff
Although things have been rough for the past month, before then Leelo was having his best learning and behavior (and happiness) period to date. When Supervisor M called me to consult on details for the progress report below, she giggled and said she'd never had so much fun writing one of these reports. Enjoy the good long snapshot of happy Leelo before we were revisited by sad, pissed off Leelo from days of yore (who had two milestones today: pooping on the bus and hitting a classmate in the face; whom we're hoping to banish with Tylenol meltaways, comfortable undergarments, a working trampoline, and pool-friendly weather; and whom I both hope and hate to hope will be diagnosed with an ear or sinus infection tomorrow so we'll have some idea about why he's so miserable in his own skin).
PROGRESS REPORT
Student: Leelo Rosenberg
Date of Report: 4/9/08
Supervisor M, MA EdS
In the past year, Leelo has experienced many changes in his instructional program, including a change of placement to a classroom at the Saint Matthews County School at Cielo Azul, an increase in the use of visual supports at home and at school, and a greater emphasis on directly teaching appropriate alternative behaviors to replace aggressive behavior. He is also spending a full day at school.
Leelo has made exceptional progress this year. As his aggressive behavior decreased and his behavior replacement skills developed, he has been able to tolerate more challenging instruction and demands. He currently enjoys a complex and comprehensive instructional program.
VISUAL SCHEDULE AND INDEPENDENT WORK
Leelo transitioned easily to Room 4 at Cielo Azul. Everyone who knows him will agree: Leelo loves school. The physical layout allows for the outdoor gross motor activity which Leelo so enjoys. The classroom is convenient for working on his functional and academic goals. In September 2008, Leelo quickly learned to follow his individual visual schedule. He currently scans the entire day (at least 15 activities) upon arrival. He consistently checks the schedule when given a name card, and when he doesn’t have a name card- he approaches staff and says “check schedule”. He is currently learning to read a text schedule by fading the pictures and enlarging the text. Leelo also uses a picture schedule at home during ABA therapy.
This year Leelo made progress in independent work. He now consistently does 5 consecutive activities, with 3 to 6 prompts, for up to 25 minutes at home and about 10 minutes at school. The activity trays or shelves are numbered, and he matches a number on his desk with the number on the activity tray or shelf. He can do a variety of activities independently, including puzzles, folder tasks, lacing, and some open-ended tasks like listening to headphones, and playing with trains or a toy piano. At home, he is able to do independent work in a variety of locations, by moving the trays to each location. His parents use the independent work trays when they are busy, and need Leelo to play by himself.
NEW SKILL ACQUISITION AT HOME AND SCHOOL
Leelo has also begun to tolerate small group experiences, and one-to-one instruction of new skills in a classroom environment. Previously, Leelo generally mastered new skills mostly in a one-to-one environment using discrete trial methodology at home. This year, Leelo is tolerating one-to-one instruction with a teacher in a noisy, busy class, and he is also participating in group circle time with up to 6 other children. For new skills, he continues to require one-to-one instruction, and to do best with 3 to 5 repetitions of a single skill at once. Contingent, tangible reinforcement is essential.
New skill instruction includes the Edmark sight-word reading program. Leelo has progressed steadily through the pre-reading section, and has now begun the sight-word discrimination or actual reading section of the program. In class, he is also working on identifying emotions, developing one-to-one correspondence, sorting and categorizing, and learning the functions of objects and senses. This year he also learned to set a table place using a placemat jig, and he currently sets the table for his entire class at snack time, with 3 to 6 prompts. Recently simple cooking activities and dish-washing were introduced.
At home and at school, Leelo has been working on his computer skills. With an adapted mouse, he can click and drag to complete simple actions on the screen. He currently uses the TeachTown program at home, to reinforce computer skills and some basic vocabulary skills. He also plays simple leisure games which emphasize mouse skills. Computer has become a preferred activity for Leelo.
As his school program capacity has grown, Leo’s home program has been modified to emphasize more functional, life, and social skills. Leelo has learned to put away his clothes in the correct drawers, and is currently learning to fold them. He continues working on learning to play games and do craft activities, sing songs with actions, and to further develop his language and social social skills. His home independent work includes many open-ended activities, which he can play with for up to 25 minutes.
TOILET TRAINING
This year, Leo’s parents worked hard with Leelo on bowel training, and he is now mostly independent at toileting and washing up afterwards. He currently wears underpants during the daytime, and pullsup to bed. He typically has infrequent accidents at school (less that once per week). At home, Leelo has bowel accidents about once a week. He generally had been staying dry for about three months, but recently has had one to two urine accidents during the day.
Leelo does not yet consistently initiate toilet use, but is scheduled trained and will always use the bathroom when given a bathroom card or when taken. At school he can withhold urine for about 2 hours. He occasionally independently initiates toilet use at home.
BEHAVIOR
Critical to this progress has been Leelo’s improvement in behavior. Since his FAA (Functional Analysis Assessment, 3/26/07), Leo’s aggressive behavior (hitting himself and hitting others) at school has been reduced from an average of 8 episodes per hour (range 3 to 16) to 2 episodes per hour (range 0 to 5). Previous episodes at school often involved 5 or more hits to himself and/or others, plus an escalation in intensity. Current episodes are generally 1 to 3 hits, and his behavior does not escalate.
Appropriate Replacement Behaviors: Leelo has learned some key replacement and coping behaviors that address his needs to either escape from demands, get attention, or to get tangible materials (usually a straw). He has learned to request a break using a voice-recorder break button, and this month he has been verbally requesting a break without the button. He has mastered tapping adults to get their attention, and continues to work on calling them by name. With a “wait card” prompt, he can wait appropriately for at least 30 seconds in context. He independently transitions between activities with a name card, even when his behavior is escalated. He is learning to use headphones to enjoy music and also block out aversive crying, screaming, and other noises. He has learned to tolerate ending preferred activities, especially access to a straw, which he now consistently ends by counting to five and giving the straw back to the adult. And he has learned to play and work by himself, without adult attention, for up to 25 minutes.
Medication: Leelo’s behavior improvement is likely due in part to ongoing use of the medication Claritin since Spring 2007. His aggressive behavior had previously increased during the winter and spring, and he appeared to have headache pain (head hitting, rubbing, preference for forehead pressure); so there was some suspicion that he was suffering from allergies and sinus problems. This winter/spring of 2007-08, while on Claritin, Leelo has not experienced a long period of behavior escalation. [SNORT. Did I brag too much? Sigh.]
Problem Behavior Prevention and Response: In addition, implementation of other behavior plan interventions have been critical to his learning and maintaining appropriate replacement behaviors. Staff currently prevent behavior problems by using a range of strategies, including managing straw access, maintaining routine, using visual supports and reducing verbal instruction. Staff also teach Leelo replacement and coping behaviors, including waiting, requesting breaks, tapping or calling people for attention, and schedule use. Staff respond to problem behavior by prompting Leelo to use these more appropriate skills to meet his needs. The staff at Cielo Azul rotate within the class, so Leelo has had to learn to tolerate some variation in instruction. This is beneficial to Leelo, as long as all staff are skilled in his behavior plan implementation and instructional goals.
Visual schedule and prompts: Learning to follow a visual schedule has been central to Leelo’s reduction in aggressive behavior. Previously, Leelo was regularly aggressive during transitions, including transitions within a multiple-part activity. With the visual schedule, Leelo understands what is happening now, and what will happen next and later, and he appears much more relaxed and able to engage with this understanding of his day. In addition, visual prompts have been helpful in teaching Leelo to wait, and to walk together instead of running ahead.
Independent work: Engaging in independent activity has also been important in reducing problem behaviors. Leelo enjoys attention, and previously engaged in aggression and self-injury to get attention. In addition to asking for attention in more appropriate ways, it was also important for Leelo to learn to tolerate and enjoy his time alone, and to engage in activities without adult attention. His progress in this area has been wonderful to observe. Leelo is becoming self-directed, and independent. Most importantly, he appears to be enjoying himself in purposeful ways, and is now better able to participate in his family and school communities.
SUMMARY AND RECOMMENDATIONS
Leelo has made great progress in the past year. He has mastered skills which are pivotal to his ability to learn in a classroom and to function independently. The use of Applied Behavior Analysis (ABA) in understanding Leo’s problem behavior and learning challenges, in developing and modifying interventions, and in tracking his progress has been critical. Specifically, Leelo behaves more appropriately and makes progress when skills are taught in small steps, when reinforcement is consistently provided contingent on correct responding, and when data is collected immediately.
It is recommended that he continue to receive ongoing behavioral consultation at school and at home. His home program should emphasize functional living/self-care, social/ language, and leisure skills. Generalization to siblings, parents, and family friends should be the focus. Instruction to increase food tolerance is recommended. Classroom consultation should continue to emphasize implementation of Leo’s behavior plan; the use of effective instructional strategies to teach new skills and to increase Leo’s time actively engaged in learning across the school day. Opportunities for peer social interaction and group learning should also be increased.
Technorati Tags: ABA therapy, ADHD, autism, autism blog, autistic, county classroom, special education
Leelo Loves Materials
Turns out that bringing "materials" when we go out and having them available all around the house is a really good thing for Leelo. During our usual Saturday breakfast at the cafe, instead of constantly asking for straws or croissant, he strung beads, laced cards, and did concentration-style matching games. He still ate a lot, but not as much, and not at such a panicky rate.
He is still having a rough time, though, behaviorally. He woke up at 6 AM with what must have been a hell of a headache, because when I walked to his bed to greet him and say "good morning," he reached up, started smacking me and then his head, and ripped off my necklace (I really will have to give up wearing necklaces for now as that's the third one in six months). He calmed down eventually but I am going to take him to the doctor tomorrow to make sure he doesn't have an ear infection.
Also, as Seymour pointed out, Leelo's increasing girth means that he is just too wide for even the size 10 - 12 underwear we've stocked for him. If he has inherited my clothing sensitivities (any binding or pinching means headaches and nausea) and has a headache as well, then he must be really miserable.
And, again, some of it is just behavioral, as in when he punches me and then prompts me, "No hitting!" Or yesterday, when we arrived to pick up Izzy from her girl scout meeting and she wasn't ready and we had to take a walk around the block and then Izzy still wasn't ready. I told Leelo that we couldn't get "in the van" just yet. He looked me right in the eye, and then calmly and deliberately raked his nails down my forearm.
It's the usual good and bad around here. I'll end with some good:
One more reason why I love Leelo's school: On Thursday night, Supervisor M sent a letter to Leelo's teacher, asking if we could get home-use copies of eight picture/word icons that Leelo uses in class. Four copies of each (painstakingly printed, copied, cut out, and glued to cards) came home in Leelo's backpack Friday afternoon. Sometimes I am just dumbfounded by the supportiveness of his class staff.
Technorati Tags: ABA therapy, autism, autism blog, autistic
