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.

Aggression and Perception and Perseverance

Leo spent Monday and Tuesday of this week in a state of agitation, specifically targeting Mali. While in hindsight there were several possible triggers (post-birthday party sensory processing, Daylight saving time, high dose red food coloring from his cake, Keith Olberman's censuring) in the moment his aggression came out of nowhere -- we had just run several errands with a compliant and content boy when he started trying to attack his little sister in the middle of the grocery store.

He didn't get Mali, but she (understandably) freaked right into hysteria. And wanted to be picked up and comforted. Which I couldn't do, because I needed all my hands and strength to keep her brother from reaching her. And then my heart shattered into a million pieces, which made getting those two children all the way across the store to the exit challenging -- I'm not sure how it happened, but we did get back to the car, with rearranged seating and several minutes of me sitting in the driver's seat, paralyzed and gripping the steering wheel. I don't know how you handle shell shock, but for me it means driving at about 10 MPH -- which also happens to be a sign of drunk driving so I'm lucky we didn't get pulled over.

On Tuesday I tried an outing with them again, for Leo's actual birthday -- to his favorite cafe for a croissant. I was hopeful, as on the way there Mali asked him for some of his hoarded goldfish crackers and he handed them to her without my prompting, and without fuss.

We arrived. We parked. We couldn't get five steps away from the car without him flailing, lunging, and yelling at his little sister. Mission aborted.

I really started worrying -- we haven't seen that kind of violence from Leo since 2008, pre-Risperdal. What if Leo was sliding into an aggression cycle again? That would mean going back to no errands, no restaurants, no travel, no delicate visitors, and an even more circumscribed world for our social boy. A friend suggested investigating precocious puberty (our boys seem more susceptible), I started wondering about dental issues or meds dosage (his dosage has only changed by a miniscule amount in two years, though he's gained 15 - 20 lbs during that time), other folks suggested allergies and the Olberman-adjacent factors above.

But, because I have a hard time giving up and Leo deserves the benefit of the doubt, we tried going to the cafe again today. He was fine -- not one sign of aggression. He didn't sit next to Mali, but we don't allow such proximity anyhow; the measure of success was his not leaping across the table to get to her. And the rest of our afternoon was pleasant as well. I don't have an explanation for his seeming return to equlibrium, but I'm grateful.

Today we're going to attempt a family hike. There will be much discussion of the day's exact steps and schedule, and his iPad will come along for both visual schedule and entertainment purposes (did you know there's a Thomas the Tank Engine app? Leo is in heaven). The hike will be a schedule change, so we'll see if that's a bonafide trigger. And winter is always more difficult for Leo, as evidenced by seven years' worth of ABA data.

Not giving up on my boy. I enjoyed this video from Japan, about appreciating our kids' thinking instead of making assumptions:



P.S. One thing is certain -- Mali is going to need extra support, extra processing, extra listening, an extra-safe space to let her feelings work themselves out, because she is feeling traumatized -- again, understandable. She keeps asking me to sell Leo, and refused to sing him Happy Birthday. This is more than standard little sister antipathy. If you have advice or experience in the matter, please do share.

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.

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!