Leelo Status Report: Early June 2009

Yesterday began with a disappointment: The weather report predicted rain, which meant I needed to cancel the planned SEPTAR/families of kids with special needs picnic.

I had really been looking forward to bringing all our kids to a local park and taking it over, would not have entirely minded if the mommies and toddlers that usually dominate decided to leave rather than conceptualize my son and his friends, and had wanted to have a good, worry-minimized outing with all my kids, their friends, and my friends.

Instead, Signora Blog and her family came over for pizza and a rollicking good time, and we all watched the sky not rain. D'oh!

Leo's therapist, V, was here for part of the evening, but left at 7:30. All the kids were still tumbling like puppies in a cardboard box, and Leo jumped right in when SB's son Alfredo encouraged him to come jump on the trampoline. Leo. Playing. With other kids. For a long, long time. Watching them bounce and run made me grateful for just how beautifully Leo is doing right now.

We have documentation, strategies, and next steps for trying to keep that beautifully going.

Seymour and I met with Leo's two program supervisors on Tuesday (Supervisor M runs his program but concentrates on the school angle; she subcontracts Supervisor E to do QA and run the home program; the school district pays for both).

I don't know if it was the caffeine-fueled environment (I love you, Coffee Bar) or just how well Leo is doing at the moment, but we charged through a very full agenda with focus and results. Here are Supervisor M's notes, slightly modified.

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READING
Home/home program: Headsprout reading: computer phonics-based, to supplement reading instruction at school.

• Action: Squid and Seymour will do 30 day trial, consider purchasing 1st half of the program

Reading at school. Leo is only doing about 10 minutes of EdMark sight reading program each day, because Leo's teacher is the only one of the classroom staff trained in its use.

• Action: Squid and Seymour will request teachers to dedicate more time to teaching Leo to read, less time in unstructured recreational activities with no clear goals (indoor play, walks).

PANTS (and how to keep them up)
All agreed Leo’s body shape not able to combat the forces of gravity; solutions to be tried this summer:

• Dedicating time to teach Leo to better pull up underpants, then pants, using mirror for feedback
• Trying alternative types of pants (e.g. zipper and snap, briefs instead of boxer-briefs)
• Trying a belt
• Keeping pants cuffed so they don’t get pulled down from being too long

EATING
Further slowing Leo down when he eats; Supervisor E noticed great improvement, after not seeing Leo for five months; at school, trying to further slow him by having him chew for 5 seconds prior to drinking water; caution being taking to prevent Leo from becoming insistent/dependent on adult counting.

S: I would note that we have encouraged Leo to take a drink of water between bites, and to "take a small bite." He has made this part of his routine, and now asks us to repeat the quoted phrase before beginning to eat. He does continue to take the smaller and alternating bites for the remainder of the meal. Not sure if this is a negative; at the moment he's not capable of making his own meals and we don't leave him unsupervised around food, so an adult will always be there to give him that first prompt.

TOILETING
Night-time training; preliminary data suggests Leo withholding BMs in daytime and going in pullup on his bed; also suspicion that Leo is often dry when he wakes, and then wets pullup once awake if not taken immediately to bathroom; also drinking a lot in pool/tub- primes him for accidents.

• Action: Supervisor M will send out questionnaire this month for Squid & Seymour to complete, to gather more info, identify objectives, make a plan.
• Action: Squid & Seymour will resume the use of food reinforcers for spontaenous & successful BMs during the day.
  

AGGRESSIVE & SELF-INJURIOUS BEHAVIOR
Behavioral definitions of aggressive behavior and self-injurious behavior: review, revise to make sure we are all describing what we see the same way:

• Aggressive behaviors- have potential to injure others: hitting, pushing, pinching, scratching, kicking, elbow grinding, head-butting others, throwing materials
• Self-injurious behaviors- have potential to injure Leo: slapping self on face and stomach, hitting head against surfaces; hitting hands against surfaces;
• Precursor behavior: stomping

• Action: Supervisor E to review with Therapist V, Supervisor M to work with Squid to incorporate on google spreadsheet (see below), Supervisor M to incorporate clarifications at school.

HOME PROGRAM
Changing emphasis on home programming; shift towards quality of life arrangements, and away from precision programming more typical of intensive early intervention; in general, all programming should: increase access to reinforcement, reduce exposure to situations associated with problem behaviors.

Strategies generally include: using visual supports, maintaining consistency and routines while introducing variety and novelty in controlled, manageable ways, making most of periods of reduced behavior problems.

Squid & Seymour gave examples of how Leo is participating more in family and other activities that increase his access to “life reinforcements,” such as trip to the Maker Faire, hiking with family, kicking soccer ball back and forth with Iz and Seymour for about 10 minutes, playing with siblings on trampoline, took off with Squid to go hiking, stay in motel and swim.

Now is a great time to make the most of Leo's current low rates of behavior in terms of teaching replacement behaviors, social interaction skills.

Leo better tolerating Mali when she is crying, screaming; important first step for replacing hitting others with an actual skill/behavior; consider having dedicated weekly time for Leo to do specific activities with each sister.

Seymour: idea of having Mali participate by sharing materials with Leo, especially things he likes (e.g. getting him his straw, swimsuit to go swim, etc).

Critical to all of the above: repetition. Leo learns best with frequent, brief, repeated opportunities to practice. So:

• Action: plan regularly for soccer, or hiking, or other family fun.

INDEPENDENT WORK RESISTANCE
Squid & Seymour indicated Leo resistant to doing independent work, possibly due to boredom.

• Action: Supervisor M and Squid will create 6 bins of activities for Leo to do during independent time, possibly including “my busy kits” activities. Bins can be rotated weekly to prevent boredom. About every 2 months, consider adding new materials and toys to keep it interesting, varied, and fun for Leo.

VISUAL SCHEDULE
Important strategy for increasing independence, further increasing Leo’s tolerance for new things and changes in routines; Important to expand schedule, and increase Leo’s independent use of schedule, rather than fade it out. Keep in mind- we all use schedules, datebooks, blackberry/iphones to maintain our schedules too.

• Action 1: continue morning routine, switch “new straw” location, so Leo maintains flexibility around this
• Action 2: begin using schedule for evening routine or “witching hour”
• Action 3: next steps to increase independence- Leo should independently travel to schedule, and/or keep modified version of schedule on his person
• Action 4: Leo should set up parts of schedule in which there is some choice

GOOGLE SPREADSHEET
Revising the online google spreadsheet: make more quantitave for more effective analysis, also quicker to complete.

• Action: Supervisor M gave Squid sample of more ideal formatting, Squid will implement.
  

About Autism & Dietary Interventions (Again)

A recent response to a parent asking about dietary interventions:

Dietary interventions didn't work for my son at all, and his ABA team -- with more than 20 years experience working with early intervention/severe/non- or limited-verbal autistic children -- say they've never seen it make a difference, and that when people do say it makes a difference, it is usually because the child is also in a behavioral program, or that while the child's developmental path was delayed, it was more accelerated than other kids with autism. [Yay for run-on sentences!]

However, I do have many friends who swear by dietary and DAN! approaches -- in many cases because their kids had food sensitivities that made them uncomfortable, which resulted in exacerbated behaviors. So, you might as well give it a try if you have the energy to do so.

Before then, I would reach out and ask for personal stories of improvement. Do not believe anyone who gives you the Jenny McCarthy "Mommy Instinct" explanation. Especially don't believe anyone who thinks they can change your mind by yelling louder than you. You want documentation.

If you're going to try diet/supplements, be thorough and methodical and record everything. I found Google Docs spreadsheets to be an especially excellent way to do this, as you can share data online with team and family members.

Most importantly: Don't let anyone talk you into anything you perceive as sketchy or scammy. Far too many people take financial advantage of autism parents' desperation.

Two different perspectives on autism and alternative approaches:
The Fleecing of the Autism Community
Woggle Bug: Blogging About Autism

Please make sure you're fully informed about autism/vaccines:
Vaccines and Autism: A Deadly Manufactroversy
What do Those Vaccine Studies Actually Say

Good luck,

-S

P.S. I have an extra copy of Special Diets for Special Kids if anyone would like it, as I can now make GFCF recipes/food choices in my sleep.

When Summer Sucketh

That is what I wanted to title my latest BlogHer post, but I settled on When Summer Is Extra-Special instead:

http://www.blogher.com/when-summer-extra-special

Here's the first paragraph. Please do click on through, and let me know what you think (and how you feel about your own upcoming summer).

Summer. Now there's a word that terrifies parents of school-aged special needs kids. We do not associate the word with "break." For us, summer means carefully orchestrated school, services, and respite schedules are going to implode, and we will need to scramble and scrape to arrange new ones...

Weekend Highlight: Leo at Maker Faire

I will hopefully have time to expand this post later, but I just wanted to let you all see how much fun Leo had at Maker Faire yesterday:



Mali liked everything, as long as she was big enough to participate (when she wasn't, there was ANGER). Here's her being happy:



For Iz, the highlight was playing the theremin. She's wanted to see a theremin for a long time, and getting to actually play one was a serious thrill. Just check out her ear-to-ear smile:



The theremin tune she requested to perform was Saint-Saens' The Swan, which she had played at her piano concert the previous day. (The theremin player was impressed by her choice, and we could hear him fine-tuning his own performance for quite a while as we wandered through more Maker Faire exhibits). Another one of her piano offerings was the 12th Street Rag:



And, in needing to fulfill some kind of typical sassy child stereotype, Mali took Iz's scissors and cut herself some bangs. She now looks like Dee Snider. I am in mourning.

Two Firsts

1) posting this from my phone.
2) My mom is now reading this site

Hi Mom! You already know I'm a twit, no surprise, love you!

Louse-y New Can I Sit With You? Story: The Cooties

OMG The COOOOTIES! Read it now: http://www.canisitwithyou.org/?p=425

By far the funniest story we've featured on Can I Sit With You? lately. Our thanks to ShinyGrape of American Goulash for letting us republish the tale (and to Liz Henry for discovering it).

Please remind your kids that anyone can get lice. The only real difference is whether you have to deal with them yourself, or can pay someone else to get rid of them.

This is a particularly timely story, given that Mali's school is embroiled in Lice Wars: The Second Coming. I now bring her in five minutes early so that her teachers have enough time to give that curly mop a thorough cootie-check before she enters the classroom.

So far, nothing. Whew. I'd hate to have to shave her head on the day she turns four-and-a-half:

We Hike

We like to hike. We like to climb. We like our kids to hike and climb.

Since we live in the Bay Area, we can hike and climb in a different park every day, should we want to. Which is a good thing, since the kids' Memorial Day Weekend is four days long, and hiking and climbing is one reliable activity our family can do together.

Scenes from the first two days of the weekend:

Briones Regional Park


Castle Rock State Park


Castle Rock State Park

What's Going On

We have become a bit more about the proclamations and features and a bit less about the journaling in this space, so it seems. But I don't want to forget:

Leo's triennial IEP was a big success. All of his services were retained for the summer and the upcoming school year: speech, occupational therapy, 1:1 aide, behavioral program supervision at home and at school (and for two weeks during the month between summer and regular school), bus. Every one of the ten educators and therapists around that table was on my son's side. It was a delightful feeling.

Mali stopped wearing pullups at night. She probably could have stopped months ago, but I just could not bear the thought of washing more than one set of sheets each day. Still not used to the feeling of a soft little bottom instead of a tough diaper under her jammies, when I pick her up in the morning.

Seymour's work got nominated for a (Northern California) Emmy. We went to the awards ceremony this past weekend. He didn't win because the judges were high but the event itself was sure a lot of fun! Who wouldn't want to party all night long with a bunch of news and weather anchors? And Jennyalice came over to relieve the babysitter at 9:30 so she could drink all of our absinthe and we didn't have to pay for five thousand hours of babysitting.

Mali didn't get in to our local Spanish Immersion school for kindergarten. And I'm okay with that. It's halfway across town, in a totally different direction than Iz's or Leo's schools, and our local school is good plus I already pass it six times a day. Also I am not-so-secretly hankering after a stereotypical first day of kindergarten -- one where we get to meet some neighbors. My kids have never gone to a neighborhood school, Leo's kinder class was a disappointment from the day one, and Iz finished kindergarten a year early.

Leo had a decent blood draw last week. I used a visual schedule with a "snack" icon following the "doctor" one, which helped him be upset only during the procedure rather than before and after as well. (It still took three of us to help him comply.) Also the ever-patient Jenijen walked down from her office on the floor above the medical office, and sat on my girls during the procedure -- otherwise Mali might have spent Leo's blood draw time trying to convince every patient in the lobby that they needed to wear disposable water cups as hats.

The weekend before that, Leo had a fantastic two days at camp. He almost jumped out of his pants with excitement when he realized where he was going! His aide said that our boy was *definitely* ready for week-long summer camp! It's so great to see that kid be so damn happy in that safe, dedicated, but non-therapeutic and purely recreational setting.

Seymour's parents arrived just in time to join us in taking Leo to camp, then stayed through Mothers Day. This was the first time they'd been able to visit us in over a year. They both looked great, and Seymour's mom looked extra-healthy and gorgeous with her new super-short haircut. She wasn't convinced the look was right for her until Iz declared that she looked like Jamie Lee Curtis. Now my MIL thinks she's going to keep her hair as is (as she should).

I realized that logistics and the BlogHer conference were not compatible this year. Serious sadness. But I sold my ticket to a woman who was quite pleased at the reprieve (for those of you who don't know, the conference sold out in about five minutes). There's always next year.

...and I took all three kids back to Costco yesterday. There's no way in HELL I was going to let one bad experience keep us down, plus I had so much good advice under my belt! We made it through just fine.

The Agents of L.U.S.T.

Or, how our friends and family have my autistic son's back.

L.U.S.T. The League of Unrepentant Straw Thieves. A grassroots, volunteer-only organization dedicated to a single mission:

Swiping drinking straws to support my son’s straw habit.

That's my most recent BlogHer post. For those who are stimmy and/or obsessive, and the people who love them.

My Kid Has Autism: Now What?

If your child has recently received an autism diagnosis, you're going to want some answers to your questions: Why? What can I do? What does this mean for his or her future?

You really won't know until your child's diagnosis is complete. If that diagnosis is based purely on a pediatrician's screening or a developmental evaluation, then it is only partial. You need to find out if there are any genetic or neurological components, seizure activities, or brain abnormalities contributing to your child's autism.

You need a referral to a pediatric neurologist.

Your pediatrician may not make this referral on their own, because regular pediatricians are not always aware of the extent to which autism and autistic-like conditions should be evaluated. If you are not given this option, you'll need to press for it. (Another potential fight, I know.)

We were lucky. Leo's pediatric neurology referral was part of his evaluation at the Stanford Autism Clinic. The clinic staff referred us to an on-campus pediatric neurologist. This is what that doctor recommended for Leo:

1. A genetic workup to rule out any of the many chromosomal conditions that can lead to, be comorbid with, or mimic autism.
2. A pediatric neurology assessment, including a general exam and family history.
3. An EEG to monitor our son's brain for irregular electrical activity (some kids diagnosed with autism actually have seizure disorders).
4. An MRI to look for structurual abnormalities in the brain, such as demyelination.
   

The EEG was a struggle, but the MRI was done under general anesthesia so logistically if not emotionally easier.

The results: of course my son had no chromosomal or brain structure abnormalities. He had a bit of irregular electrical activity, but it was consistent with patterns seen in other autistic people.

The tests didn't tell us why Leo has autism, but they did rule out many potential causes and typical physiological issues. With no answers, no more "but what if he has?," our faith about continuing to pursue 1:1 behavioral therapy -- the only proven method for helping kids like Leo -- was renewed.

Organizations like Generation Rescue proclaim to know why your child is autistic, and what you can do: let them rescue your child from autism! Unfortunately they are full of shit, though not intentionally. While a small subset of children may in fact be helped -- though there is not yet any unbiased evidence supporting this claim -- "We might be able to help your child a little bit if you're one of the lucky ones" doesn't rally frightened parents like "We can cure your autistic child!" does.

The bulk of GR's focus is not on detailed diagnoses or helping to gain skills, but on these biomedial and dietary "cures." I think most of the biomedical supplements Leo used to take were a racket.

Some do have merit. Leo still takes daily doses of cod liver oil, calcium, probiotics (though we're tapering those off), and autism-specific multivitamins from Kirkland Labs. We retained those only after consulting with a medical dietician about properly supplementing my son's self-limited diet.

And while I think there's no harm in trying the GFCF diet (even though it didn't work for us), you need to know that it is a lot of work, especially during the initial transition from a regular diet, and because so many autistic children have limited diets anyhow. You also need to be serious about it for at least one year.

Even before your child's autism diagnosis is complete, you need to decide how you're going to help your autistic child make sense of this world. Behavioral therapy is the best choice, and you can do it *even if* you decide to swallow Generation Rescue's very expensive pills. But if you have to make a choice, put your money (or your school district's money) on the approach based on evidence, not testimonials.

Gwendomama Fund: Make a Real Difference for a Real Person

Gwendomama is one of my favorite people and bloggers. She is a loud-mouthed, small-business-owning, straight-shooting, food-loving, empathetic woman and dedicated mom. She is a wonderful friend to folks both inside and outside of the computer, to parents who advocate for special needs kids, and especially to parents who -- like her -- have faced the unimaginable in losing a child.

The unimaginable happened to her again. Last month, she became a victim, and to literally add insult to injury, she has found herself in a financial hole. Please, please help us help our hardworking friend gather funds for her and her children's immediate needs: food, rent, utility bills.

We are bloggers. Our superpower is connectivity, and when we use that power for good, we can save and change the world. Please forward, blog, connect, and -- especially -- donate. The campaign will end next Friday, 5/22. No amount is too small, and the sky's the limit. Thank you.

updates (because the widget doesn't update consistently):

• 5/15 | 12:15 PM We have raised over $1000 so far, from 40 generous people, many of whom are scraping by, themselves. Blogosphere superheroes, I heart you!
• 5/15 | 6:00 PM: $1,765 from 59 contributors!
• 5/16 | 1:00 PM $2,240 from 70 contributors. Zowie!
• 5/18 | 7:30 AM $2,545 from 85 contributors. Four more days, thank you and keep it coming!
• 5/19 | 9:00 AM $2,940 from 96 contributors. Surely we can push it over $3K today?
• 5/20 | 5:30 PM $3,310 from 103 of the awesomest people ever linked by the Blogosphere. Two days left!
• 5/22 | 8 AM $3,450 from 107 scions of amazingness. Fundraising ends in 13 hours, so please give now if you can.
• 5/22 | campaign over: Volcanic thanks to the 108 of you who contributed to the Gwendomama fund; you gave us $3,475 reasons to believe in the Blogosphere!
  

Click on the widget to contribute money DIRECTLY to Gwendomama's PayPal account. Click the COPY tab to get the widget embed code: