Analysis of an Autism Parenting Fail

*Not* from the team photo shoot.

Yesterday was Leo's soccer team's photo day, but Leo ended up not participating in that photo shoot. Instead, we ended up leaving -- with me in tears, and Leo frantically upset. All due to bad decisions or not being observant enough on my part, and so all of which could all could have been avoided. Let me wallow in hindsight and tell you why.

1) Leo hasn't been sleeping well lately, often getting up at 3 AM then staying awake all day until his usual bedtime. This means both he and we (Seymour and I alternate hanging out with Leo in the mornings) are sleep-deprived and so not at our best, decision-making-wise. I should have put more thought into whether Leo would be able to tolerate an activity as chaotic and demanding as a team photo shoot.

2) Leo usually has a Sunday respite session with Therapist V, his former linebacker best buddy ever (V is strong enough to pick Leo up and sling our boy over his shoulders; Leo adores roughhousing), but yesterday their session was cancelled due to matters beyond anyone's control. So that made things harder for Leo as well -- the reliable, soothing, predictable structure of his Sunday was doubly compromised, first by V's absence, then by the photo shoot.

3) Putting on his uniform after already playing on Saturday and then not going to the usual soccer field (the shoot took place at a park nearby) was very confusing, and possibly a trigger for Leo. I should have taken more time, made more materials, explained better what the photo shoot was about, how it was going to be different from a game day. But, because I was tired, I didn't take the time to prepare him sufficiently. That is on me.

4) Anything scheduled during lunch is bad. Leo lives for lunch. Since he'd been up so long, he'd already had two breakfasts by the time we left for the photo shoot -- one breakfast rather late in the morning -- and I figured I could push Leo's lunch back accordingly. Bad idea. Lunch is at noon, no matter how many breakfasts a boy has had. That lack-of-lunch was the breaking point for Leo. I understand this now.

It was only after we'd already arrived at the park and Leo started making his displeasure known (slapping the picnic tables, yelling) that I realized my son was approaching a perfect storm of Hell No. But, as he's also maturing, I tried to encourage him to power through, to see if he could take a picture anyhow.

No. He was having none of it, and became increasingly vocally and physically agitated. I brought out various things that usually calm him -- iPad, fruit leathers, music -- but he was very much All Done.
Then one of the other parents then told him he needed to calm down and behave, which I get from an It Takes a Village perspective but which is of absolutely no use with mid-meltdown autistic kids like Leo. That's the point at which I lost it.

I already knew I'd failed Leo, was already berating myself for setting him up to fail in public -- but having a semi-stranger then judge him for being out of control was more than I could take (if you don't know me IRL, even small-scale in-person confrontations makes me cry, unless I'm righteously furious). I put on my sunglasses to cover my streaming eyes, told the coach we were leaving, and we left.

We hit In-N-Out on the way home, shared French fries and a shake, and went home. Leo changed his clothes and headed straight into our pool. And then happiness reigned. His day had normalized. He was in control. Lunch had happened. Things were as they should be.

I'm writing this down because I think it's important to show lessons learned in [autism] parenting, even if they make me look bad. Because even though I know and understand so much of what it takes to help Leo get through his day, I need to stay mindful of when and how things can be harder for him. Being off schedule in any way is confusing and stressful, as is sleep deprivation. And when I'm feeling stressed or overwhelmed, that is when I need to be extra-vigilant about ensuring that Leo has proper supports. He depends on me. As capable as he has become, and as well as he has been doing in so many stressful scenarios, it is my job to smooth the path in front of him. He deserves better than being dragged into a public meltdown.

He failed because I failed. And it made us both miserable. I wish I hadn't had to re-learn what I already know, and at my son's expense, but I hope our lesson can help other folks avoid such clusterfucks.

Leo, I love you, and I'm so sorry.

----

The only bright spot in the morning: I got to see and hug my dear friend MB, whom I've not seen in person for years. xo, Lady.

Obsessive Compulsive Denial

We had a Leo team meeting today. Me, Supervisor M, Supervisor E, Therapist V -- and Leelo, because I couldn't find anyone to watch him. Having him at our table was fine -- he was willing to do activities during the meeting's first 45 minutes as long as I kept replacing them, and let him count out and eat occasional goldfish.

I received a lot of careful and welcome reminders regarding interaction with Leo --backing off on verbal prompts for activities where the goal is independence (eating slowly, post-toileting hand washing), no verbal interaction during self-injurious behavior but, after a beat, immediate praise of praise-worthy actions, e.g., "You're sitting so nicely! Good job, Leo!"

And we talked about whether he's having his annual November behavioral spiral. He seems less engaged and more giddy, and he's been having toilet accidents at school. The stinky kind, not the wet kind. Every day this week. It's a huge, consternating surprise to us all and especially to me, because it's been so long since he's had a toileting accident of any kind on my watch that I stopped toting backup clothes or wipes. I do think it's a mostly intentional behavior, because he can hold it when needs to -- for instance, for the 30 bathroom-free I-5 miles between announcing his need to go, and reaching Coalinga. Wanting attention, wanting post-bathroom reinforcers, having trouble with transitions,  a sensory layer we've not perceived fuzzing up his internal signals? I don't know if I'd feel comfortable sending him to a new school -- even for one day a week -- if he's having toileting issues.

He's having beyond-stim issues as well. They've piled up slowly, so I wasn't alarmed until Supervisor M gently pointed out the frequency of Leo's spins, his need to trace certain paths between our car and house, and his empty rather than processing based echolalia. She wants us to confer with Leo's behavioral psychiatrist. I suggested that his OCD-like behaviors might be rooted in how much he's grown over the last year while his Risperdol dosage has remained constant, but she quietly reminded me that Risperdol helps with aggressive, not patterned, behaviors.

So it looks like we might be having a November after all. So far it's a milder version than the aggression- and depression-fests of past Novembers, but a November nonetheless. Not enough of a November to derail Leelo's planned Christmas trip to his grandparents' home for the first time in four years, but enough that steps need to be taken, and the worry furrows on my forehead are deepening.

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.

A is for Acorn, or Mali vs. Kindergarten

Apparently this picture would have been a more appropriate than the beaming, flower-bearing one in regards to Mali starting kindergarten.

The week before kindergarten had been such a frenzy of the fantastic & the fun that Seymour and I rarely sat down, but we did manage to keep the kids engaged, even with all of them out of school. And I thought we'd done a fairly decent job letting Mali know what kindergarten would be like: long day, mostly Spanish, one teacher, mandatory good listening. We anticipated hiccups with that last one, but not big ones.

Oh, honey.

When I picked Mali up from her first day of Kinder, the teacher said everything was fine. Mali also said she had a good time (I assume that's what "boring" meant when tossed off by our four-year-old drama queen and capped with an eyeroll). Our youngest immediately collapsed into an uncharacteristic afternoon nap, exhausted by the herculean effort of kindergartening.

Seymour and I felt all was well with the world, so we hugged Iz and my mom, and scampered off to our four childless nights and three childless days in dreamy Lake Tahoe. I focused my worries on Leo spending six days and nights away from us, on how he was handling that change, and whether the camp aides had the communication skills to reassure him properly, or if he was having too much fun to fret.

We checked with my mom the following afternoon, and were informed that Mali was Student of the Day on her second day! School was obviously working for her, and vice versa. My mom picked up Mali directly from her classroom for the next two days and heard nothing to contrast with our visions of Mali as the best, brightest, funniest, cutest, and chattiest student in her class.

Friday arrived, we rose early, checked out of our hotel and back into reality, then tore down mountains and across valleys to arrive at Leo's camp by pick-up time. Our boy greeted us with giggles, hugs, and an an enormous, gap-toothed smile. He had a tremendously awesome time, based on both his aide's account, and the amount of dirty gear he'd amassed. His laundry also contained no evidence of toilet accidents -- not a one! What an amazing boy and amazing time and amazing staff to keep Leo that centered and engaged and yet not too overwhelmed. (His front tooth wasn't the only thing he lost, BTW. He also came home minus his beloved plushy Catbus/Nekobus, a pair of tennis shoes, and swim goggles. I don't think they have a lost & found. Damn.)

We whisked our exuberant boy to a quick lunch at his favorite Indian restaurant with just Mommy and Daddy, then took him home to spread his post-camp love glow to Iz and my mom. Leo was then so pleased to be home that Seymour volunteered to stay with him so that Mali could have a similarly parent-focused, non-sibling-tainted pickup from school. Off I went.

When the bell rang, I bounced up to Mali's teacher expectantly, and said "Hi! I hope you had a good week?"

She looked at me without humor. "Actually, I tried to contact you but I must have the wrong number," she said, "Mali has been acting out all week. She threw an acorn at me on Tuesday, she is saying 'no' when I ask her to do things, and she is encouraging the other children to defy me. I spoke to her several times but it's not helping. I need you to speak to her."

I gaped at her in shocked silence.

She continued, "It's probably the language, doing everything in Spanish. But I really need you to speak to her."

I stuttered, "I am so ... sorry. I am so sorry. My mom was here this week because my husband and I were on vacation, did you let my mom know? She told me that Mali was Student of the Day, so we thought everything was going really well. That's really not like her, I'm so so sorry."

She said, "We pick Student of the Day out of a hat. Here is your independent study packet for next week while she's away. Please speak to her."

I grabbed Mali's hand and scampered away in shame. When we got to the car, I asked Mali why she wasn't being nice to her teacher and why she was choosing to not be a good listener. "It's your fault," she said, "because you left."

Good thing that kid isn't abusing her formidable social and emotional intelligence powers.

Mali's maladaptive kindergarten behavior made for a great story at Seymour's homebrew-buoyed and bluegrass-grooved 40th birthday bash the next day, but I am worried. I do agree with the teacher about the challenges of language immersion, but I am concerned that Mali doesn't see why she should behave when her brother doesn't stop acting "badly" or being "mean" to her whenever he can.

I think it's time to work in some behavioral approaches, i.e., systematically and concretely tracking positive consquences for positive behavior, as opposed to slamming her continuously for negative behavior -- which tends to make her more defiant anyhow.

She goes back to school tomorrow after a week's respite in her grandparents' alternate reality/boating wonderland. I hope the break has given her time to contemplate and process the environment of her new classroom. I know that Seymour spoke to her while they were afloat, and I have been gently reminding her about the importance of good classroom behavior since she returned last night. But I am aghast and fretting, and would welcome any further advice.

Autism: Using Spreadsheets for Tracking Behavioral Factors

There are so many factors that can influence or illustrate how our children with autism are wearing their own skin, including health, toileting, aggressive &/or self-injurious behaviors, sleep patterns, medications, language usage, diet, and school performance.

We've used a Google spreadsheet to track those factors for Leelo for the past two-and-a-half years, with a lot of success.

Tracking helps us back up our anecdotal observations: "Yes, he has had more self-injurious behaviors this week. He developed a runny nose on the second day of the behaviors, so possibly there is sinus involvement. The behaviors disappeared three days later, along with the runny nose."

They help us make better long-view analyses as well. We've been able to establish patterns of seasonal allergies, and also have lots of data to support our concerns about summer regressions.

Supervisor M recently asked me to revise the spreadsheet to make it more data-driven. We're also including his weight at the beginning of the month, as well as a list of the foods he typically eats every day. Here's a sample of the current version, modified as per her suggestions:

Leelo Rosenberg Behaviors Tracking Spreadsheet.

Of course, there are incidents that need no additional interpretation, as when Leelo has a spectacular meltdown in the Costco checkout line yesterday because we arrived as soon as the doors opened and there weren't any nice people handing out food samples. (His sisters weren't there, I remained calm, helped him to his feet, reminded him to keep his hands down, and met the eyes of the people around me with what I hope was a look of Autism Parent Supreme Confidence).

I transcribe his teacher's daily notes as well, from the notebook that we use to communicate. Today's notes should give you an idea of why I am so worried about summer and regression. I want my son to be doing this well, staying in this happy space, forever:

"Leelo had a great, great day today. His behavior was great (had no self-injuries). Good attention/focus. He also worked well during time for independent work (worked 90% independent :) ).

"1:1 work with teacher: Still working on the following:

1. Sight words (colors)
2. Coins (matching pics and real coins)
3. Counting
4. Fine motor tasks (nuts and bolts)
   

"He also played a table game with me (Colorama) and was able to say "my turn" with minimum prompts.

"Also very engaged in the motor room and sensory room.

"Had good behavior during snack time."

One thing the teacher didn't write down was a seriously scraped knee. This would normally be a concern, not because of the injury (kids scrape knees; it's what they do) but because he doesn't tolerate band-aids and so his cuts/scrapes tend to get infected. But he not only came home wearing a band-aid, he let me change it without complaint, and kept it on without a single fidget or fiddling for the remainder of the day. Who is this boy? I want to keep him.