The Sharer

Leo made it all the way through our cavernous new Costco without much fuss over the baguette he requested and which I placed in our cart. He so desperately wanted to attack it and shove it in his mouth while we wound our way through the aisles between the bakery section and checkout! But I told him he would have to wait, and that he could have a bite once we got back to our car. He made a few more requests for his bread and hit his head once or twice along the way, but was easily calmed, and -- so you know our benchmark -- I rate one or two yells/head slaps strictly mathematically, i.e., almost zero.

His tolerance of delayed gratification was amazing. It was not so long ago that I would have let him have a few nibbles so we could complete our trip. Now I have faith in him, and his self-control.

I tore him a hunk of baguette once he'd strapped himself into his car seat, then started loading our haul into the car. His sisters noticed him nomming the baguette, and pleaded for some, too. So I tried an experiment: I tore another piece from the baguette, then handed it to Leo, and said, "Leo, pass this to Izzy."

He did. Though all he wanted to do was to eat the bread himself, and without me mentioning any kind of reward, he did what I asked.

That would be a milestone.

He's the King of a House! And a Bush! And a Cat!

Check out this boy. I bet he's saying, "Oh marvelous me! For I am the ruler of all that I see!" While these projected thoughts mostly reveal how much Dr. Seuss we listen to in the car, my boy does rule.

His food tolerance continues to stretch and accommodate. He flabbergasted his parents three weeks ago, by willingly taking chewable antibiotics to treat an ear infection. I ran with that precedent, and bought him some chewable vitamins to see if he'd take those, too. He did! Six years of grinding NuThera vitamin pills into his rice milk, all done!

Unfortunately his food cravings -- we think it's more of a stim -- are at an all time high, and so is his weight. His pediatrician is not yet worried that he weighs 91 lbs, but Seymour and I are. More exercise for everyone, more activities to keep him away from the kitchen. Not easy as the kitchen/counter/peninsula area is our house's socializing nexus, but we'll make efforts to congregate elsewhere. Otherwise Leo thinks he gets food whenever he sees people gathered in the area.

We had Leo's annual social worker visit last week. My son did not hit her. That is a win! She did not cut our respite hours despite how well he's doing compared to last year, as Leo is still very obviously a 1:1 boy.

He is mostly cheerful and snuggly, grabbing us for spontaneous hugs and kisses, with huge lit-up smiles and giggles. He loves for us to lie down with him in the morning before he gets out of bed, and just hug. I'm normally a rather tactile-averse person, but cannot resist Leo's ever-so-sincere requests to "Lie down wif Mommy!" I'm savoring these moments, too -- I know two boys with autism who hit puberty a lot earlier than their peers, so who knows for how much longer early morning snuggling will be appropriate.

He had his first-ever full dental exam two days ago. They had no choice but to knock him out cold, and pull his loose front tooth as it was a liability for the anesthesiologist. (The awesome part: she handed me his tooth to keep, another first. He's swallowed or ignored/lost every other baby tooth.) His dentist couldn't believe what good teeth he has -- no cavities! Apparently the saying about "an apple a day" extends to dentists. He had a hard time coming out of the anesthesia, with prolonged emergence delirium, but eventually we got him into the car and took him home. Then he had a hard time remembering that he temporarily lacked sufficient balance to run rings on his beloved tactile path. By late afternoon he was just fine.

 

Yesterday we took him on our annual pumpkineering excursion to Bob's Pumpkin Patch in Half Moon Bay. He so loves running around with all the other kids, between the pumpkins, over the dead truck, through the cornstalks, around the goat pens, and up the hay bale pyramid. He enjoys his yearly trip to Bob's more than any other part of Halloween. And because he loves it so much, I feel the same way. Not that this will stop me from mooching candy off of his sisters on November 1st. (BTW, yesterday's BlogHer post is all about how to do Halloween -- or not -- when your kid has special needs.)

Even among all this happiness and goodness, I know that winter's coming. Leo's never had a good winter. The fact that Leo's never had a good winter is why he's still at the all-quirky-kids school rather than in a special ed class on a regular campus. But today, he is good and we are good and hope you're good, too.

Dr. Bridget Taylor: Interview, Webinars on Autism & Problem Behaviors

The amazing behavioralist Supervisor M has been leading Leo's ABA therapy team since he was two, but not every child with autism has my son's luck. ABA therapy can be expensive, school districts can be resistant, and qualified therapists can be elusive.

How lovely that Dr. Bridget Taylor has become the senior clinical advisor for Rethink Autism, the online ABA Therapy curriculum resource. I know am not the only parent who, upon hearing that ABA therapy could actually make a difference for my child, daydreamed about having Dr. Taylor on his ABA therapy team. Dr. Taylor is the ABA therapist and researcher who helped Let Me Hear Your Voice author Catherine Maurice's children lose their autism diagnoses. She also co-founded New Jersey's center for learners with autism, the Alpine Learning Group. Thanks to Rethink Autism, she can now be part of any ABA therapy team with internet access.

The Rethink Autism team is aware that not everyone can afford their monthly subscription rate, so they have engaged Dr. Taylor to conduct free webinars, both tomorrow, Wednesday, October 20, and Monday, October 26, in which participants can discuss autism and behavioral problems with her, via live chat. Here is Rethink Autism's summary of the webinars:

Does your child with autism have trouble cooperating? 

For many parents and families with children on the autism spectrum problem behavior can be challenging. That's why this month's free live webinar focuses on the best problem behavior treatment and prevention strategies available. You'll learn how to begin immediately applying these techniques with your child and have a chance to ask questions via live chat with autism expert Dr. Bridget Taylor, a leader in the field of autism treatment and research, and rethink autism's senior clinical adviser.

Register for a webinar session now by clicking a date below:

Wed, Oct 21, 2009 12:00 PM - 1:00 PM EDT

Mon, Oct 26, 2009 7:00 PM - 8:00 PM EDT

For those who can't participate in the webinars, read on -- Dr. Taylor agreed to answer a few of my and Supervisor M's questions about autism, managing problem behaviors, the role of the internet in the autism community, and the most important things parents should be focusing on at various stages in their children's lives:

What has drawn you, personally, to the Rethink Autism online and webinar model?

As a clinician working in the field of autism treatment for over twenty years, I am very excited about being involved in an innovative company that has the potential to reach many families of children with autism. I have always been committed to translating complex concepts and teaching techniques for families so that they can be empowered to teach their children. Rethink Autism’s video-based curriculum presents teaching techniques in a simple step-by-step manner so that families can see how to teach their children.

Do you plan to have your Rethink Autism curriculum contributions about managing problem behaviors at home, etc., evolve with your research findings at the Alpine Learning Group, for example reducing too-rapid eating by use of a pager prompt?

All of the Rethink Autism’s teaching techniques and procedures are based on research that has been conducted in the field of applied behavior analysis. The techniques that I will discuss about managing challenging behavior are based on general principles of learning, and how challenging behavior is usually a result of the interaction between environment and behavior. That is, behavior occurs in relationship to certain events occurring in the environment. If we can identify those events and determine the reason for the challenging behavior, we can change behavior for the better. The pager prompt study is one example of how you can teach an individual with autism to attend to specific cues in the environment in order to reduce a behavior of concern. In this case eating too quickly.

Some children with autism engage in problem behaviors due to skill deficits and; a general lack of self-management skills; they do not yet have a rich repertoire of independent play, leisure, and self-care skills (and so must always be engaged by an adult). In addition to teaching independence, what are some ways school staff and families can manage these problems without promoting problem behaviors (e.g. excessive repetetive/stimulatory behaviors, prolonged dependence on adults?

Yes, many children engage in behavior because they lack skills in specific areas. So, teaching children with autism play and leisure skills can replace some repetitive behavior. Teaching children with autism for example to follow photographic activity schedules can help to keep children stay engaged without constant prompts from adults. Research in the use of activity schedules has shown that children can sustain engagement by attending to photo cues that serve as prompts to engage in play and leisure activities. In addition, teaching other functional skills such as how to ask for a break when demands are too difficult or how to wait for a preferred activity can be helpful to reduce challenging behavior associated with these contexts.

What are some suggestions to include the family member with autism in general family activities? Day to day living?

Make activities very predictable and start with short realistic activities. For example, if you are going to a restaurant, begin with one that does not require a long wait (e.g., a fast food restaurant), and bring your child’s preferred activities to engage in during the waiting period. In general, help the child with autism know what is expected of him / her in during the activity (e.g., first we are going to the store and then we are going to Grandma’s house). Pictures can serve as cues for children as to what will take place during the activity and the general sequence of the activities.

In terms of general family routines such as eating at the dinner table together, start with a short duration of sitting and use timers to help the child know how long he will have to sit. For other family activities the child may need an incentive or a reward to participate. For example, if you want the child to sit and watch a TV show with his sibling, intermittent rewards such as access to a preferred snack while he is watching the show, may motivate him to participate in the activity the next time. Over time, you can fade the snack out. In general, the more you practice family activities and make these activities very predictable, the more the child will learn about what is expected and it will become easier over time.

How can parents assist the teams they collaborate with? 

Parents are clinicians' best allies. They can assist in many ways. For example, they can help clinicians identify important goals to work on (e.g., cooperating in haircuts, attending religious services, playing with siblings), they can help in transferring skills learned during teaching sessions to every day, real-life activities, and they can support the intervention by implementing the interventions in daily life. In addition, since they truly know their child best, they can provide essential information to team members about the child (e.g., likes, dislikes, general patterns of behavior, etc).

What is the one suggestion that you would make to a parent of a newly diagnosed child? 

Access interventions based on applied behavior analysis as soon as you can.

What would be your one suggestion to a parent whose child is ten years old? 

This is a good time to reevaluate the goals you are working on. Ask yourself, “will he need this skill when he is twenty years old?” How often will this skill be needed in daily life? How is this skill going to help him be as independent as possible?

How about for a parent of a child who is transition age? 

Identify agencies and supports in the community that your child can be part of for the long term. Identify agencies that have multiple program components such as career planning, residential planning, and recreation and leisure activities.

What is one piece of advice you would give all parents? 

No one knows your child better than you – you will be your child’s strongest and most passionate advocate. You are after all the architect of your child’s future and as you collaborate with professionals help them to learn as much as they can about your child and your vision for your child’s future.

What is one thing you would suggest that parents avoid? 

Avoid interventions that are not grounded in sound scientific research.

What are your thoughts with regards to the internet and the role it plays in the autism community? 

The internet can be a great resource to families in terms of learning about treatment, accessing services, and gaining support from other families. Unfortunately, it can also lead families down the wrong path to a treatment that does not have a lot of research supporting it. When parents google “autism and treatment” they are confronted with hundreds of options, this can be daunting for families. But, the internet allows families to learn about effective, science-based interventions such as applied behavior analysis. Rethink autism’s innovate web-based curriculum is one such example of how the internet can potentially change lives.

Double Dipping on BlogHer

BlogHer had me plaster up two posts this week, rather than the usual just one.

The first is about the Anita Teldadi adopted-child surrendering scenario. As I wrote last week, the story punches some of my most sensitive buttons. I tried to sort out my tangled emotions in the post, about what relinquishing a child means to someone who has done it as a birth mother, and also to a someone who claps her hands over her ears and starts yodeling whenever anyone brings up the term "residential care" with regards to Leo. When does being the best parent for a child mean putting them into another's care? I'd be interested to know what you think.

The second post is an interview with Autism Science Foundation president and founder Alison Singer. She is a role model for parents like me whose attitudes and outlook and education about our children with autism and indeed on autism in general have evolved over many years. I particularly admire her positivity; she shows that it is possible to highlight approaches harmful to our children or autistic adults, that drain the wallets of the autism-affiliated and credulous -- without using a verbal baseball bat. She calls for us all to move on, be smart, be mindful of the role of love, and to save our energies and resources to support our kids and families, now. She also talks about her relationship with the Neurodiversity community, and clarifies what exactly the Autism Science Foundation does and plans to do (hint: support research research research!).

I'd be grateful if you'd leave any comments on the BlogHer posts themselves. Thanks.

TARANTULA!

Here is the latest critter delivered by the cats, and which I found no less gruesome for being both alive and un-disemboweled unlike their usual rat/lizard/bird/bunny offerings.

I didn't realize we had tarantulas in Northern California, until Pat the Cat announced this one's appearance on the back porch just as our two babysitters arrived to spring me and Seymour for date night, and while I was finishing making the kids' dinners.

Amidst that melee, and spurred by the girls' squeals of delight and disgust (Mali: "I don't like arachDids!") I left off assembling Leo's PB+J sandwich, but that turned out to be no problem -- our boy demonstrated mastery of recently practiced skills, by finishing making his own damn sandwich, thank you very much Mommy who would rather take pictures of giant spiders than put the final touches on her son's dinner. The peanut butter was rather globby and the jam spotty, but it was a passable, edible effort. Go Leo!

If Seymour ever doubted my love for him, he can stop now. Because when I called to let him know about our eight-legged guest, his first reaction was to ask me to capture it so he could see it himself. Which I did. Which he appreciated.

New & Upcoming: Alison Singer Q&A; Oh, Internet!; Teen Bullying

Got me a new post up on BlogHer, about how there is no reason for those of us with special needs in our lives to be sad and lonely if we have internet access. We can be sad and lonely TOGETHER! I jest, but seriously, people -- if you're feeling isolated, Twitter and Yahoo! Groups are just waiting for you to plunge into their warm, squooshy, welcoming depths. I have specific recommendations in the post, but don't forget to leave a comment about your own favorite online special needs community resources, too.

Can I Sit With You? has a new post, as well, with guest input from tween and teen social skills and advice expert Annie Fox. She covers four frequently asked teen bullying questions, with ideas for what kids can do in each scenario. Meaty stuff. Check it out and let us know what you think about her take on teen troubles.

On October 6th I'll be doing a BlogHer Q&A with Alison Singer, founder and president of the Autism Science Foundation. Whether Ms. Singer makes you cheer or spew nastiness, I am certain that you, like me, are curious about the direction and goals of the Autism Science Foundation, why it was founded, and how it will differ from Autism Speaks. Read Ms. Singer's own perspective on the "driving off a bridge" statement in the Autism Every Day video, neurodiversity, and autistic heterogeneity, then send me your questions or leave them in the comments before September 27th.

First Day of School: Hallelujah!

This is what a third grader, a middle schooler (sixth grade!), and a kindergartener look like right before I march their little bottoms out the door and into the car for a three-fold, three-location drop-kick to their respective schools/buses. (Leo is not snarling, nor does he have indigestion; this is his new take on "smile!")

Bye, darlings! Take your time coming back home!

Don't get me wrong -- we had a lovely summer, full of adventure and visitors and travel and parties and hikes hikes & yet more hikes -- but I am cherishing having my house to myself for the first time in two months. I suspect I'm not the only one tickled about school resuming, hmm?

I shall now scrub the house from top to bottom wearing nothing but my bra and underwear, because I can.

Wanted: Your Questions About Rethink Autism

In case you haven't seen Rethink Autism, it is a new online program for delivering video-based ABA therapy training, collaborative data tracking -- and really good, compassionate, sensible information about autism in general -- to families who might not otherwise have access to ABA resources. It is available to anyone with a computer and internet connection, for $100/month (personal account). The program covers academics, social skills, behavior, and motor skills. Here's my recent writeup from this blog:

http://www.squidalicious.com/2009/08/aba-affordably-on-demand-rethink-autism.html

Since that post, people have asked me questions about accessibility with regards to costs, languages, offline populations, and general direction. I don't have the answers myself, but the Rethink Autism team has agreed to answer such queries during a 9/21 Q&A on my blog. If you would like to submit a question, please send it to me by Thursday, 9/10.

I'm not aligned with or compensated by Rethink Autism except intermittent site access for evaluation purposes. I just think it's a wonderful and much-needed resource for the ABA therapy-using segment of the autism community, and want to help them make it even better.

A Letter to Leo's Teacher

Maudlin But True Week continues here at Squidalicious.com, with an open letter to Leo's teacher that I wrote on request for the buttkickerinistas at BlogHer as part of their Back to School campaign:

A Letter to My Child's Teacher

It is all about naked swooping emotions and dreams and hopes, so bring your hanky or feel free to roll your eyes (I vascillate, personally). Leave a damn comment -- there or here but there preferred. And there's a nifty tool at the end called Mr. Linky that lets you link to your own letter as well, should you (and yes you should) choose to write one and make it part of the post.

I will write that, after one week in his new third grade class, everything I've written about the teacher and Leo's potential in her class seems to be marching along. He had a lovely first week, with "0 transition issues" on the second day. I am wishing for similar success stories for all of your children as this 2009-10 school year ramps up.

Iz's Poem About Leo

I found this poem while compulsively properly sorting out bags of "recyclables" that were mostly not recyclables, and which resulted from Iz and my mom doing a detritus purge on said girl's bedroom while Seymour and I were off on our anniversary trip to Tahoe. (Our girls can thank their grandmother for being able to see the floor of their room now -- Mali discovered that their rug is a map of the world!)

Iz said I could publish the poem, as long as you all understand it's not her best work:

Leo
My brother
Leo is different
Yet I love him
still. Hits, grab elbows,
chews on straws. I
cope with all of this
For I am his big sister.

Note that it's not a good idea to wipe tears from one's eyes with hands that are covered in pencil shavings.

Leelo Starts Third Grade

Leo starts third grade in the morning. Think he looks cool enough to go to school with the big kids? I think he'll be fine, I trust his teacher, he spent some time in the new class during summer school to help ease the transition, and I'm looking forward to helping support some great learning this year. I think he'll be thrilled to get back to school and a super-structured routine.



He's had six summer weeks without any weekday daytime aide support, teaching, or respite (excepting one week of sleepaway camp). We've never gone that long without at least some daytime in-home support. But Leo's in such a good space with both his temperament and his ability to occupy himself that it's been really no problem for either of us -- as long as I keep an eye on him when Mali's around. (I hope this good period lasts, as his respite hours -- which we use for two witching hour evenings per week and a few hours on the weekend -- just got halved.)

This last week or two has seen lots and lots of talking, some spontaneous patterning: "Blue star green star red star orange star! Red heart purple heart yellow heart..." Also a lot of repeated phrases from books & songs but with his name inserted, e.g., "Leelo happy! Leelo sad! Leelo good and Leelo bad!" (from The Big Book of Beautiful Babies -- a favorite since he was a baby). He's been doing really well with pronouns, especially proper use of Me. And he's on another creative call-and-response vocal scatting bender. Really cool patterns there.

He's also been more willing to try different foods. We got him to eat peanut butter & banana, and pb & honey sandwiches! I also got him to chew a Marcona almond but he spit it out. Still, he put it in his mouth and chewed when asked. There may be new food options coming for our boy, yet.

As for the rest of us: Iz has one more week before starting sixth grade. This milestone apparently requires a quest: we need to journey to San Francisco to find her the perfect plaid miniskirt. Hokay. Maybe once we're there we can find someone to satisfy her question as to whether the geographical jurisdictions of San Francisco City & County are identical.

Mali is adjusting to kindergarten. By the end of her second week in class, she was able to endure an entire day without any formal disciplinary sanctions. She says she's too tired to speak in Spanish when she gets home, but if you start speaking Spanish to someone else and she understands you, she can't help but join in. She is not yet bucking against the quite boring dress code, and instead goes for fabulous the moment she gets home (if you scrutinize the Leelo picture above, you'll see her reading a book while wearing her gold tiara, a flower lei, a tutu, and dress-up shoes).

She has also taught herself to swim down to the bottom of our pool and retrieve the dive toys Leo usually plays with. Watching someone that tiny swim like a mermaid is pretty cool.

Seymour continues to have the best job ever. Two days ago he hiked Angel Island with an archaeologist, in a couple of weeks he goes to Jackson Hole. And that doesn't even cover the cool things he gets to do in the office, and the amazingly talented people he gets to do them with.

Meanwhile I'm tired (count many times I wrote "cool" in this post) and my computer has gone kablooey and I'm writing this on Iz's laptop. The problem with my beloved 3 1/2 year old MacBook Pro workhorse is not (just) the overfull hard drive -- that is supposedly not damaged. No, something's amiss with the OS, says the Genius Bar people. So I tried an OS reinstall. That failed, but in doing so it took up all the remaining space on my hard drive -- no space for a restarted reinstall. Back to the Genius Bar in two days. If you've tried to contact me on my personal domain email address since mid-day Friday, I'm not ignoring you. I just can't access that account right now.

Off to bed. Badger lent me a nice quirky page-turner called A Fistful of Sky and I want to conserve enough energy to get through at least three paragraphs.

ABA Affordably on Demand: Rethink Autism

If you're at all familiar with ABA Therapy (Applied Behavioral Analysis), you know that you can use its anchor techniques of carefully planned positive feedback and reward/reinforcer systems to influence almost anyone's behavior. And that's what I wrote about at BlogHer this week (I hope people decide to use their newfound behavioral powers for non-nefarious purposes):

BlogHer: Using Behavioral Approaches in Autism (And on Anyone)

I also wrote about ABA therapy in general, why it can be so useful for helping children with autism learn, and -- most importantly -- a new way for autism families who want but normally wouldn't have access to an ABA program to bring it to their child: an comprehensive online program called Rethink Autism. As I said on BlogHer:

Rethink Autism creates a customized ABA curriculum for your child, provides hundreds of concise but thorough video-based lessons supplemented by printed lesson plans to teach you how to teach your child, allows automated scheduling so that you can coordinate with with your ABA team as to who's teaching your child what and when, and produces really straightforward data tracking and analysis. They even provide email curriculum support. This is a valuable and very well done resource, and I recommend it.

But here is something that I didn't mention on BlogHer, and which I think new, overwhelmed autism families need to understand: You can use Rethink Autism's many, many videos to learn how to interact with your child. If the integrated data tracking and scheduling is too overwhelming, then put it off until you're ready.

Instead, browse the topics -- which include motor skills and social skills as well as academics -- watch the videos and print the lesson plans, and start practicing those techniques with your child. Learning to communicate and motivate children with autism aren't skills that come naturally to many parents, and how-to manuals can only describe, not model. Video demonstrations, however -- those show exactly what to do. And if you need clarification, Rethink Autism provides email support. Once you're comfortable using the techniques, start incorporating the data tracking elements.

I've included some screenshots of the Rethink Autism interface below, so that you can see for yourself how well organized and planned the program is. I found it easy to use and the interface beautifully and gracefully designed. Click on the screenshots to enlarge them:

Individual lesson plan interface

Tracking data and team comments within a lesson plan

Video lesson interface: choosing steps

Video Lesson demonstration, including physical prompt

Regarding cost, as I wrote on BlogHer:

Rethink autism is also affordable. In fact the monthly Personal (as opposed to Organziational) subscription rate is less than one hour's time with a veteran behavioral therapist. While this is an incredible value, if it's still outside your family's budget, there are organizations like ACT Today! that help autism families fund their children's needs.

Rethink Autism provides excellent resources beyond its paid ABA therapy programming. It also provides free-of-charge resources for new autism families in its What Is Autism section, including a thoughtful Coping/Living With Autism area that reminds parents to appreciate and accept their child, themselves, and to act instead of reacting. There is also a Community section, in which Rethink Autism participants can ask questions of the staff and each other about issues and concerns.

Rethink Autism is a resource that the ABA therapy-using section of the autism community has needed for a long time: comprehensive, easy to use, and accessible by any individual with a computer, internet connection, and browser. I am grateful to the good folks at Rethink Autism for creating these tools, and I encourage those of you who reach out to or mentor families with new autism diagnoses to spread the word.

Disclosure: Rethink Autism granted me a few days of trial access, but I was otherwise not compensated in any way. What I have written above is my honest opinion, as it always has been and will continue to be in any reviews that I post in this space.

Leo Camp Dispatches

We are not supposed to call Leo's camp under any circumstances except emergencies. So you can imagine the intensity with which my chest exploded each time the phone rang with the camp's caller ID. KA-BOOM! POW!

Thankfully neither call was about an actual emergency, the kind that would require us to remove our extremely lazy selves from this mountaintop.

One was a question: What the hell does your kid eat? My answer: since there's an anaphylactic peanut allergy at camp and he mostly eats PB&J sandwiches, not a hell of a lot. I told them that it would be okay if he spent six days surviving on bread, bananas, apples, and the yogurt I sent in to be mixed with his meds. It's camp. Now that I know the camp does food allergies lockdowns, I'll send extra food (veggie booty, extra yogurt etc.) just in case, for next time.

The second call was to let me know Leo got bitten by another camper. No broken skin, and Leo's fine. But he'll have a mark. My reaction: I had to stop myself from laughing. Not that it wasn't serious, but -- they're calling me for that? There's no way his injury could be worse than the bite marks & black eyes from a recent Lucy/Mali brawl. He's likely forgotten about it already. Seymour and I think Leo probably tried to swipe someone else's food.

I can't wait to find out what else transpired at camp when we talk to his aide during Friday's pickup.

Meanwhile, Seymour and I have two plans for today: 1) Truckin' down the Truckee & 2) Dinner & libations with Jennyalice's wonderful sister Demanda & her pastorly partner. Mmm, vacation!

Leelo Team Meeting Report August 2009

Here are the latest whats and hows of Leo, from his most recent team meeting. Leo himself left for week-long sleepaway this afternoon. I am trying not to freak too much, or worry about the sniffly nose his camp nurse said was fine as long as he avoids a fever. I am also convinced he'll lose his first front tooth while he's away -- it was flapping in his mouth like a broken gate. I hate to miss that. The camp crew said they'd try to save it, if possible.

Leo’s Team Meeting Notes 7/30/09: Squid, Therapist V, Supervisor E, Supervisor M

Headsprout
Does about 15 min per session, needs prompting to keep on task and not click mouse randomly, working on consonant-vowel (CV) and CVC words and simple sentences.

ACTION: continue with adult facilitation (not independent work)

Pants
Pants up: working on buckling at school, next step-transfer skill to belt on waist; Leo now using briefs (not boxers)

ACTION: get mirror in bedroom to increase Leo’s ability to self-monitor and manage his own pants; be sure to slow Leo down when he is dressing so underpants are pulled up neatly first, then pants. Keep pants short (e.g. cuffs)

Eating Speed
Nice, steady improvement at home and school, except when very hungry- frantic, grabs food.

Update from Therapist V
Nice progress re: folding laundry, following directions w/traveling; getting attention using name, giving a play idea; walking- fading out holding hand.

Action/CAUTION: - Leo may bolt into street without clear warning/provocation, be sure to reinforce his walking beside you and be ready to grab him if he runs into traffic.

Action: next step for getting attention and giving a play idea- Leo needs to further expand these requests (currently fluent with tickles, hugs, physical play and affection); consider as next steps- requesting books and activities, using visual choice board prompt or the actual materials. (Therapist V, Therapist E, Therapist M, Squid and Seymour)

Behavioral Definitions/Approaches
Aggressive behaviors include: hitting, pushing, pinching, scratching, kicking, elbow grinding, head-butting others, throwing materials

Self-injurious behaviors include: slapping self on face and stomach, hitting head against surfaces, hitting hands against surfaces,

Precursor behavior: stomping

Responding to target behavior: (Therapist E and Therapist M modeled)

Aggressive: MOST IMPORTANT: EVADE (step back/away, do not approach or touch)

• “Stop” + visual
• “Sit Down” + gesture
• “Check schedule” +name card
• Leo transition to next activity +schedule icon

Reinforce Leo at end of this sequence if compliant.

Self-Injurious- prompt more appropriate replacement; redirect; ignore; remove straw if he is chewing/holding.

If blocking, do NOT make eye contact. In general, minimal eye contact when problem behavior is occurring.

Social interaction and play, and problem behaviors with siblings

Squid expressed concerned about safety, and is currently emphasizing preventing problematic contact, and keeping Leo engaged to reduce aggression;

Therapist M- Leo needs to develop a repertoire of positive ways to interact with Mali, Then, he needs to practice positive interactions with Mali at least 5 times as frequently as he is aggressive with her. So- if he hits her 3 times in a day, there should be at least 15 opportunities to practice some more appropriate way of interacting with Mali.

Leo also needs to be able to control himself (vs us managing his aggression by keeping him engaged, limiting his world to those environments that do not occasion aggression).

Supervisor M continues to recommend that Therapist V work with Leo to greet/hi-5 etc. Mali at least 5 times during their session, and that they do at least 1 table activity/game together, with Leo and Mali across from each other (e.g. try Eric Carle picture-imitation game), or an obstacle course (they have done this together in the past). If necessary, 2 adults can facilitate to ensure safety.

This activity should be a regular part of Leo’s visual schedule with Therapist V, so it becomes routine for Leo.

ACTION: Squid and Seymour to communicate with Therapist V, Therapist E and me around this, so that we can develop a comfortable plan for working to reduce Leo’s aggressive behavior at home.

Toilet Training
Next steps- Action: Squid elected to continue working on standing while peeing at the toilet at home and in other locations. Therapist M will facilitate at school.

ACTION: re-visit toileting initiations and night-time continence in 2 months.

Independent Work/Leisure at Home
Continue to manage materials- variety, novelty, high-interest, systematic rotation; and to do in various locations

ACTION: keep adult prompting to a minimum; if prompting is necessary (e.g. if Leo gets off task, needs help) , it should be a physical prompt or a gesture, and NO EYE CONTACT. (Therapist V, Therapist E, Squid, Seymour)

ACTION: store weekly supply in big bin- let Leo chose from these to set up own materials. Then rotate out each week. (Therapist M set up this week)

Visual Supports at Home
Family reports consistently using mini-schedule for 3-5 activities, or “first-then” situations, especially helpful when out of house, changes in routine, etc. Using mini-binder for storage (alphabetical).

ACTION: more name cards needed, and icons for going on trip (Therapist V, Therapist E)

ACTION: fade out picture on “snack” card to increase sight word vocabulary (Therapist E);
Put meals, snacks, and straws on schedule to reduce behavior problems (Squid, Seymour, Therapist V)

School Update
Therapist M met with new Teacher C and former teacher M to facilitate transition. It is likely one para from current class will move to Teacher C's class with Leo.

Good Day or Bad Day? Revisited

Here's a visual follow up on Worst Day/Best Day, as illustrated by Leo:



Leo drew this happy face and wrote his name spontaneously after a day in which we went hiking, went to his favorite restaurant for lunch, and on his first day out of school. What a happy, happy face he drew! I didn't necessarily associate it with having a good day; I figured this iteration of a happy face was his standard version until...



...we had a bad day. He and his sisters didn't get along, we didn't get to go on a hike, I had to drag him on unexpected errands after he was already done erranding for the day. After we finally came home and he got to relax for a bit, I had him do a few activities (dot-to-dots, simple mazes), then had him turn the printouts over to draw on the back.

First he drew the decidedly UNhappy face in the upper left-hand corner.

I said, "Leo, can you draw a happy face?"

He drew the unhappy face on the top right.

I drew the happy face in the lower left and said, "Leo, this is a happy face. See the smile? It's like a U. Can you draw a happy face?"

Leo drew the still very unhappy face in the lower right hand corner. He knew exactly how to draw a happy face, but sure as hell wasn't going to do it if he wasn't feeling happy!

Excellent communication, methinks. Smart boy.

Autism Corps & Autism.Change.Org

I really should have posted about Kristina Chew featuring The Autism Corps on Autism.Change.Org two days ago, when the post first went live. Kristina gets why the Autism Corps idea is so important, because her son Charlie is similar to Leo in many ways -- both of our beautiful, smart, boys have the kind of autism that requires supervision and support all day long, every day. I am grateful to Kristina for putting her shoulder to our idea.

I didn't post immediately because Leo is out of school from now until August 31st, and I'm fully immersed in the structured and intensive parenting required to help my son navigate all his free time, necessary to let him anticipate his day, and critical for keeping him from getting disoriented or upset. Leo's parenting takes precedence over my blogging.

Don't misunderstand me -- Leo and I are having a good time, hiking and swimming every day, and Leo is as happy as a boy whose communication challenges make him completely dependent on others can reasonably be. I'm not a champion organizer or a fast writer, so right now parenting, hiking, and swimming are about all I can do without siphoning from the sleep reservoir -- which I swore I wouldn't do during Leo's summer gap. It's not fair to Leo (or his sisters, or my husband) to spend weeks coexisting with a grumpy, enervated zombie.

And this zombie is one of the lucky ones. Seymour and I share parenting duties, and he's even been letting me have some extra morning time, because he knows that's the only free time I'll get until the kids go to sleep. Leo receives twelve hours of respite each week (he probably considers it respite from me during the summer gap), which I try to split between parenting the girls, working, and making our house less hovel-like.

If I have all that support and back up and I'm this tired, how must the parents who don't have shared parenting and respite be doing? I'm guessing they could use something like The Autism Corps. I know I could. I know my co-conspirator Jennyalice could. I know Kristina could, as could many adults on the autism spectrum.

Please, don't forget to sign the Autism Corps petition:
http://www.gopetition.com/petitions/ask-michelle-obama-to-meet-with-autism-families.html

And if you're a fan of Kristina & her blog partner Dora's work on Autism.Change.Org, please let the Change.Org people know. Autism.Change.Org is an unparalleled source for autism news, perspectives, information, and advocacy -- there is nothing like it in the Blogosphere -- and its loss would be a blow to our community. Take action, write in, direct message the Change.org people, support Kristina and Dora, now. Thank you.

Self-Righteous SoCal Smiting

I enjoyed our recent trip to Southern California. Mali and I traveled down separately, and broke the road trip in two by having lunch with Seymour's Fresno-adjacent aunt and cousin (she's actually a first cousin once removed, but my husband's Portuguese family does not make distinctions between the various degrees or strata of cousinhood).

Then Mali and I went to Hollywood, and were given a personalized tour of the studio where Leo's godmother produces kids' TV shows. I got to take a picture with a real Skeksis! The various talented and kid-loving creatives adored Mali (who had turned her personality meter to 11) and made her custom character drawings and gave her show-related toys. Then we had dinner at Versailles (NOM) and got to meet the newest Rosenberg girl baby (CUTE).

In the morning our friend Skip treated us to a Westwood breakfast and recent medical media gossip. I then had lunch with Roo and Linda at Mexi-Casa in the O.C., and got to marvel at how well my friends are taking care of their health despite everything else that's going on in their lives. (The gym is a valid priority. Who knew?)

Then to my mom's house in San Diego where I saw Iz for the first time in almost two weeks, and got to also hang out with my mom, baby brother, and teenage niece Nicole. The six of us had three days of lazy beach dazing and Fair-going, cooking and socializing.

Then Seymour and Leo arrived, via the much-crowed-about successful one-way SJC-SAN flight. Seymour said that Leo had had a great week, temperament-wise, so we decided to take our entire group of eight straight from the airport to a local locals' Mexican restaurant.

Leo wasn't pleased to be trapped in a car with bickering sisters after a two-week break. He was less pleased to arrive at an unfamiliar restaurant, and started to make unhappy noises. I realized with growing panic that it was lunch time at a busy seat-yourself restaurant, that most of the tables were full, and that seating an octet would be a challenge even during a slower time of day.

Then I spied a table for eight in the back corner. There were two young women seated in the middle chairs, but they were next to an empty table for two. The restaurant seemed like the kind of neighborhood place where people would naturally rearrange themselves to ensure everyone who needed a seat got one, so I grabbed Leo and walked over to the two women, and tried not to look too wild-eyed as I asked, "Hi, excuse me, but would it be okay ... we have a large party and were wondering if you would mind moving to that table for two? We'd be really grateful."

The closer of the young women swiveled her head around, putting me face-to-face with a strain of SoCal vapidity I'd almost forgotten about:

"Yah, well, you know, we're kind of really in the middle of eating right now? But maybe you could sit next to us if you want?"

Eight people in the spot for two people? Really? Fine.

My family stalled, not being able to fit six people into the available seats, while I sat Leo down next to her -- though not so close as to imperil her -- and started taking out some of his activities and snacks. He was not impressed and started hitting his head. BAM-BAM-BAM.

She looked horrified and leaned further away, not understanding, I suppose, the nuances differentiating a tantrum and a meltdown. I apologized in faux-saccharine tones and switched places with my son. Then my not merely socially-enabled but charming and handsome brother asked the women one more time if they wouldn't mind switching tables, and the two practically jumped over the aisle into the empty seats. My brother transferred their trays with a smile.

I smirked. Because you know what? I am all done with people who refuse to help others -- whatever the need -- because they just don't feel like it. We need to be better than that, and if some people need slight unpleasantness to motivate ultimately positive behaviors, so be it.

Leo settled down once we arrived at my mom's house. The rest of the trip was the best vacation our family of five has ever had: beach excursions, walks, family meals, and Independence Day fireworks. Leo remained chipper.

We had another mid-trip lunch on the road trip back -- this time with my L.A.-based brother- and sister-in-law and their trio of girls. My BIL loaded us up with fifteen pounds of his custom charcuterie (we have since been swooning and sighing over and nibbling on eight different cured meats varieties, bacon included). I got to hold my new niece a lot a lot, and my SIL showed me the fantastic new fenced playground and bluff-top walking path in her neighborhood. I think we might be able to bring Leo back there. Another full-family trip option.

We hit sticky I-5 traffic as it was the last day of a holiday weekend, but Leo somehow maintained his cool even as the girls devolved into stereotypes, whining "Are we there yet?" every five minutes. I did not again need to get passive-aggressively self-righteous on any other strangers. Which is what I prefer.

Tremendously Successful Travel With Leelo

I'm not sure why I said I would write this post earlier today. I needed to get Iz to camp, get Leelo back home and ready for the schoolbus, take Mali to swimming lessons (which she uses to hone her comedy routine, not learn water skills), and then pick up her friend Lucy to distract her with imaginary Sparkle Puppy Super Veterinarian scenarios. Thinking I could do anything beyond kid-prep and chauffeurring and popping out some tweets was poor planning.

Still, no harm done. We are having a relatively mellow summer week and blogging is an elastic medium. But last week's San Diego trip with Leo? That was planned, examined, tweaked, and replotted until we had accounted for every detail we could anticipate. Planning was what made that trip with my boy and his autism possible.

And it worked. Leo was a star on his visit to San Diego. He cheerfully tolerated the flight down and the marathon road trip back (he was a much better sport than his Bickerson sisters), and was mostly happy and content to stay at my mom's house.

Here's how we prepared for our boy and his autism to have a successful trip away from home:

1) Do a Local Trial Run.
Leo and I recently spent one, experimental night at a hotel. I chose a location (Sebastopol, two hours away) that was close enough to turn tail and run home if we had to. We stayed at a hotel because I didn't want to risk interrupting family or friends' sleep. Leo did not have a problem sleeping away from home (though he did have issues with the pool not being open at 7 AM), and we had evidence that successful travel with our boy was indeed possible.

2) One-Way Flight the First Time
Leo and Seymour flew Southwest, which has an official policy of pre-boarding kids like our son. Leo enjoyed the flight down, but if he hadn't then we didn't want to worry about flying him back. Our destination was a day's drive away; I took the car down ahead of time and met Leo and his dad at the airport, and we all drove back together.

3) 48 Hours Are Plenty
We didn't want to push our luck, or stress Leo out with a long trip. A short, two-night visit seemed like the best way to succeed -- and indeed, it was. Leo got to have plenty of fun before coming right back home to his regular routine. We might try a longer trip in the future.

4) Choose a Destination With More Options Than You Think You Need
My mom's place is an ideal vacation spot for Leo, and I wouldn't take him anywhere that didn't have a similar variety of options. We could walk to one beach, and drive to several more. There is a hiking path out the back door. A nearby park has swings and a slide. There is a wonderful waterfront for taking walks when Leo goes into dawn-greeting rooster mode. There is a porch swing for Leo to chill out on if he gets overwhelmed and needs a quiet space. We rarely had to worry about how to keep him happily busy.



5) Stay With People Who Will Help You
Traveling with kids who need 1:1 supervision can be exhausting, even if those kids are good-natured. So we stayed with relatives who were happy to hang out with our boy in short stretches. If we attempt future non-family trips, I will research local special needs babysitting options in advance, so we can have a small bit of respite. As much fun as we all had, if my mom and brother hadn't pitched in occasionally, we'd have been exhausted.

6) Rearrange Accomodations As Needed
Leo loves my mom's house, but he simply cannot sleep in her guest room. It is too bright, and its location on the top floor makes it too hot for him during summer nights. Leo was up by 3:30 AM on his first night, which had us worried that he no longer tolerated sleeping away from home. But once I pleaded with everyone in the house to play musical beds and he got to sleep in a dark cool room on the ground floor, he slept through the night. *Whew*

7) Bring Lots of Engaging Activities
Leo currently enjoys dot-to-dots, mazes, matching activities, etc, and he likes to do the same activity multiple times. Instead of buying several of the same activity book, I made copies of their pages to tuck in every backpack and bag we brought with us, and laminated other copies to use with dry-erase markers. And I have mentioned these multiple times (and am not employed or compensated by their producer), but the My Busy Kits are a great idea -- lots of sensory, tactile, and open-ended activities, good space-savers, and all three of my kids love them (Leo was the focus of our trip, but he does have sisters). No matter where we were, we always had something with which to engage our boy.

8) Plan Time-Consuming, Self-Directing Excursions
The shore walk mentioned above takes at least an hour. Going to the beach takes at least two. Leo needed supervision but was otherwise self-directed during both. During these activities, my and Seymour's energies were able to shift to lower gears. Plus we enjoyed the swimming and walking as much as Leo did -- I was positively giddy to see my entire family having a good time in a crowded public beach.





This was the first full-family trip we'd taken since Spring 2008, when Leo exploded in the SeaTac departure lounge. We pretty much gave up on traveling with him after that, which is why I am so excited about last week's success. I almost can't believe Leo was such a happy and willing traveler, but am so, so grateful.

We may not be the globetrotting family of my pre-parenting dreams, but I'm tentatively hoping to resume traveling on our previous scale (before Leo's rough behavioral patch, he'd been to Hawaii, Seattle, Southern California, and Nevada, several times). We'll keep our destinations reasonable, and tailored to his needs. Who knows, Leo may one day get to fulfill his grandparents' dreams, and come boating with them. He loves to contemplate waves and water, and I love to think how soothing he would find the scenery below.



I won't despair if extensive travel doesn't happen, but how wonderful to once again imagine that it might!

Leelo in Wonderland

Leo is going on a plane today.

That is huge news, and speaks to how wonderfully he is doing in general. Air travel is something we'd written off after a departure lounge meltdown fourteen months ago, and while his aggressive behavior escalated from the summer through the winter of 2008. On January 1, 2009, we put him on a very low dose of Risperdol, and it was a switch-flip. Almost as though all his senses all been previously misaligned, and he could now focus on things other than trying to process each moment.

Since the beginning of 2009, Leo has been increasingly been so content, so confident, so affectionate. He is engaged with his environment, and his family. We are locked in a vicious positive-reinforcement cycle: he behaves well, we shower him with praise and affection, he likes that and wants more, he repeats and expands on the positive behaviors.

Some mornings we now have to wake up our former dawn-responder alarm clock. He usually gives me a sleepy, "Mommy, get in the bed," and if I do lie down, he enfolds me in a bear hug. It's delicious.

His good mood had meant minimized aggression both to himself and to others. During provoking situations, he will start to lunge as he used to, but now pulls himself back or hesitates before he makes contact. That is fantastic self-control. I'm impressed and proud.

He has lots of spontaneous and new language, and this past week especially it has been bubbling up furiously:

• "Dora is on TV, Monsters [Inc.] is a video!"
• "Stand up, Mommy"
• "I'm hungry!"
• "MOVE!" [proper imperative form].
• "I need to run to the potty" (spontaneous potty run!)
• "Turn on TV," then "Turn it OFF" (when done).
• "Move your arm" [to me, proper spontaneous pronoun]
• "Want to lie down in the bed wif Mommy."
• "Lie down, tickle my belly"
• "Jump with me" (on trampoline)
• "Wear your crocs" (when he wanted Seymour's shoes).
• "Cut my apple."
• "Don't spin around" (a current stim is spinning during transitions between activities.)

(Half of this language was collected by Seymour. One more reason to love online spreadsheets for tracking data -- If I'm away, I can log on remotely and keep up with how Leo is doing, whether my husband is available to talk about it or not.)

He has also been doing really well with color and shape matching activities, pre-sight reading word-matching, dot-to-dot, and maze activities. Therapist V, his home ABA therapist/respite provider (who also works at a local autism school), has been instrumental in helping Leo identify new activities' goals in cases where I could not figure out how communicate them. Once he understands them, Leo has been mastering these visually-based tasks very quickly. Like many other kids with autism, he is smart as hell, but cannot always express that intelligence through traditional learning routes.

This is a boy who is ready to fly.

The girls and I are already at our destination at my mom's beach town home, and will be picking up Leo and Seymour in couple of hours. Leo has been talking about airplanes and airports for a couple of months, so I hope he enjoys having his wish fulfilled.

I can't wait to see how our attempt at a full-family vacation goes, because we miss taking our kids to stay with relatives and seeing the cousins -- all the cousins -- frolic and bicker and play. We're keeping this experimental Leo leg of the trip brief and controlled -- one-way, short flight, less than 48 hours at my mom's place, then driving home. If Leo can't tolerate being away from home, we can leave.

But I'm feeling optimistic. We're staying next to a park, can walk to a beach, I've brought Leo's favorite videos, toys, and stacks of xeroxed activities, and stocked up on his preferred foods. There is a trail behind my mom's house; if Leo gets antsy, we can go for a hike. He will still need vigilant supervision, but my mom and my little brother and Seymour will be here, and my girls are mostly self-reliant and hanging out with their teenage cousin Nicole -- Leo's need for a 1:1 adult companion shouldn't exhaust any of us, even if he is less than content here.

Have a happy flight, sweet boy.



(Mali & I planted these dahlia & gladiolus bulbs in March, and have been entreating them to bloom for weeks. This picture was taken the day before we left on our vacation; the flowers are of course about to explode. At least we got to see some of them bloom.)

Journalist Brian Deer vs. MMR Researcher Andrew Wakefield

Those who keep up with reporter Brian Deer's ongoing research into Dr. Andrew Wakefield's questionable research practices re: autism and the MMR vaccine, or who read the Schaefer Report, may have read that:

"Press Complaints Commission Orders Sunday Times to Remove MMR journalist's Stories on Dr. Wakefield from Paper's Web Site"

The Press Complaints Commission (PCC) of London, an independent body that oversees journalism fairness in the UK, has issued an interim order calling for the Sunday Times to remove stories written by Brian Deer about Dr. Andrew Wakefield from its web site. Dr. Wakefield had filed an extensive complaint with the PCC regarding errors of fact in Deer's reportage on the MMR vaccine and its possible relationship to autism. The General Medical Council (GMC) in the UK is presently hearing evidence involving Dr. Wakefield and two of his colleagues following a complaint to the GMC by Deer himself. The PCC decision today appears to indicate there are questions about the accuracy of the Deer stories. (Full article)

The problem is that the article excerpted above is from the media arm of Thoughtful House, which is Dr. Wakefield's US research/treatment facility, and that it distorts the facts (as reported on LBRB):

The Sunday Times has not been ordered to take down the articles. The PCC [Press Complainants Commission] decided to postpone its investigation until after the GMC [General Medical Counci] reaches a decision on the allegations of misconduct. This makes sense. If Wakefield is found guilty the complaint will fail. Meanwhile the PCC has asked the Sunday Times to remove the article from its website until matters can be resolved and the Sunday Times has agreed. [...]

So no order was issued, no judgement was made and there is no suggestion of impropriety by Deer or the Sunday Times. All the suggestions come from one source, Wakefield himself. (Full article.)

More from Brian Deer on Dr. Wakefield and the MMR/autism brouhaha.