Before I address the completely understandable furor surrounding the now-infamous (thanks in large part to my friend Stork Doc) Smockity Frock's blog posting (see also www.squidalicious.com page for all the links, including the original now deleted post) I want to detail the now-infamous "Nordstrom Meltdown of 3/26," since it was as bad as it could possibly get, and we still survived. In short, all the girls needed shoes. That means they needed their feet measured, and Rachel Klein, aside from being a top-notch sales professional, is also highly sensitive to Ellie's sensory issues. She neither dilly dallies in measuring her nor puts her in a position to feel threatened or uncomfortable. The shoe adventure went fairly well, considering Lelli Kellies were involved, and any mother of a young girl child knows the spell those shoes put on our progeny. It's like freaking fairy magic.
Anyway, the second part of our mall adventure was to have a snack by the fountain outside the store. Ellie usually is good about staying in her seat while I procure food, but the fountain is just. so. desirable. There's water in it! It's cool to the touch! It's like a mirror! People throw things in it! It makes a sound! She literally could not stay away from the water, and I could not both stay in line at the Cafe to order and repeatedly stop my child from pitching forward into the fountain and drowning. After the fourth time I had to leave the line sans provisions I asked the woman behind me to hold my place because I had a special needs child who needed immediate attention. Her response was, "If you can't manage your children in public, you have no business bringing them anywhere." Mind you, the twins were plopped in the seats, chatting between themselves, not causing an ounce of disturbance (except for Emma telling Ellie to "get your dupa in your seat"). My only response to this woman was, "I take that's a no?" A decision had to be made. I could see the whole picture, quite Gestalten, and understood that my only option under the circumstances was to evacuate the troops. The water was going to be endlessly tempting, the risk of Ellie falling very real, and the combination of the two too stressful for me to manage.
Herein lies the crux of our story.
Anyone who has a child with an ASD knows that transitions are hard. We prep our kids for transitions between events, we use picture schedules, PECS cards, verbal cues. We build in time for in-between time, emotional change-ups, travel. We run like Italian trains under Mussolini...we're dictatorial about the timetables, but dammit if things don't get done. Throwing things in reverse without proper notice is disastrous. I know this. I've lived in Autismworld a long time. The rules are tattooed in my brain. Yet even armed with this knowledge, I made a choice to remove Ellie from the attractive nuisance on a dime.
It didn't go well.
She threw herself on the floor and crawled back to the fountain. She kicked. She rolled. She pushed me away. She almost smacked her head on the ceramic tile edging between the mall floor and the fountain precipice. She screamed. She ran away. She begged me to let her put her hands in the water. She used every muscle in her 40 pound body to get as far away from me as humanly possible. Meanwhile, her sisters observed this with their own emotional responses (crying, clinging to each other) and stuck to me like glue. In the bitter end, 15 minutes after it started, I potato-sacked a four year old who is fully half my height through the store with four coats, three balloons, two other kids, a purse and a bag full of shoe boxes in tow, desperate to get Ellie into a small enough space where I could guarantee her safety from herself. Were it not for a former colleague at the Big N, Marshae King, stepping in like the professional mother of 3 she is to help me, I would still be there, by myself, struggling, hyperventilating, wondering if someone was calling 696-KIDS on me while clucking about bad mothering.
This brings me to Smockity and what she doesn't get. Clearly she has a fetish about behavior and manners. Good for her. I live in a please and thank you world as well, and my kids know it. Anyone, anyone, who has spent any amount of time with my children, from family to my friends (including my childless friends, male and female) note that my girls are polite, funny, and generally perfectly behaved by most three and four year old standards. Do I get my fair share of sass and pushback from my typically developing three year olds who are trying to find their independent place in the world? I do, especially from Emma, and as one of my best friends noted, "You're going to have to break that one like a stallion." This is what we want three year olds to do, despite how frustrating and exasperating it is. They need to fight us. This is how children learn who and what they are as individuals.
But what happened at the mall was not sass. It was not Ellie wanting her way. It was the sudden, unexpected, and wholly jarring removal of a sensory experience that I know her brain was telling her she needed by me, her mother, the center of her world, the one who is supposed to make all sensory experiences right. I know what water does for her. I have seen her whole body cave from ASD rigidity into amorpous relaxation as I pulled her around a swimming pool while humming in her ear. And yesterday, when I weighed in the balance her safety versus her brain's need to decompress, I couldn't in the moment justify the risk. There is no way to explain that to my child, to her sisters, and there is certainly no way to announce it to every looky-loo who judged me yesterday--and there were many--as they observed an overwhelmed 5'1" redhead chasing a competely out of control kid around a store.
Smockity doesn't get this, obviously, and I think it's partially what Stork Doc and the others posit, which is essentially that Smockity is a self-righteous jerk. I also think it's because she has only parented children who are typically developing (and seems to have had no contact with children who aren't). Smockity doesn't have to go through the very complex and intense process of looking at an undesirable or unsafe behavior, deciding if it's related to the ASD in some kind of sensory way (sensory seeking, sensory avoiding) and, if it is, assessing whether the behavior can, in the moment, be shaped into a more desirable option (is redirection possible? how, and how quickly? if not, what's plan B?) all while evaluating what steps need to be taken immediately to avoid a repeat of the behavior in that context. These mental shenanigans often take place in two minutes or less, tens of dozens of times a week. It would be easy, as Smockity does, to dimiss the behavior as "spoiled," "indulged," and whatever other modifiers she chooses, and immediately set upon punishing it. But it wouldn't address the real underlying issue, and hence deny both parent and child an opportunity to learn how better to function in a world full of Smockities who are ready to judge and reject, ostracize and humiliate.
I for one want to live in a world that embraces, loves, and values. So does Ellie. So do her sisters. I hope you come with us.