Echoes

Of the things I know now about autism, one of the big ones I wish I had known from the start is how echolalia functions in Margaret’s (yeah. Margaret. I’ll get to that) brain. Reading up on it fell off the priority list for a while as Margaret started to develop more spontaneous speech, but in the last few weeks I’ve been reading more about it.

“Echolalia: That’s What She Said” by Musings of an Aspie is the single best breakdown I’ve seen of it. Easy to understand, and from the beginning with her immediate echolalia down to non-immediate echolalia for self-regulation, I can trace the four-year arc of her speech development. It’s fascinating. I wish I had realized sooner what the echolalia meant, and how to use it as a tool.

Margaret has moved more into spontaneous speech, questions, and give-and-take in the last several months. Earlier, when I wrote that she was adjusting well to school, she was at the time. Between the new schedule of days, business trips, and house guests, Margaret began to show signs of emotional and sensorial disregulation–meaning, that between autism and SPD, and her routine changes, she was holding herself together with metaphorical tape and string. There was only enough in her for utilizing one or two senses at a time, and after throwing on the anxiety of routine disorder for good measure, I noticed a big drop in her spontaneous speech. More using delayed echolalia, more uses of the third-person, more echolalia as a means of regulation. This is interspersed with huge insights into her character, like when she found the vocabulary to tell us that she found “Maggie” to be an ugly name and she wants us to call her “Margaret” from now on, and tempered by some physical outward signs of extreme upset.

One of the regulatory times has been on the way to school. I was irritated with her the third day because she refused to bring her own lunch box in. I was wrong. I was so in the wrong. Why? Because with a new schedule, with new aides, with going to consecutive full days instead of broken-up halves and fulls, she was DONE. She couldn’t handle one. new. thing. And her lunch box? We bought brand-new this past summer, and she loved it at home, but was now incredibly upset by it. I couldn’t understand why she was refusing to take it and breaking down in tears. I got snappy. I didn’t handle it the way I should have. I didn’t listen to the behavior.

I wrote once that autism has forced me to break down who I was and rebuild myself as the parent I needed to be for Margaret. This doesn’t make me perfect, and the thing about echolalia? It keeps me honest. Most people would say to themselves after getting snappy with their kid “Oh, well, it really wasn’t so bad.” The justification, the “oh, but I’m a nice person, she knows that” that comes after. Not so. Margaret echoes my every inflection, my emphasis, my slightly spitty sibilants. She sounds more like me than I do.

So on to echolalia as self-regulation: on the way to school, we now do this script.

“I ASKED you to bring your OWN lunch box in. YOU need to be responsible for it.”

“That is what I said. Mommy didn’t realize you were anxious. I had no right to get that irritated with you. I am sorry.”

“Mommy was not kind. She was angry.”

“I was not kind. I made a bad choice, Margaret. I’m so sorry.”

“I ASKED you to bring your OWN lunch box in. YOU need to be responsible for it.”

And we repeat as much as she needs to hear that I’m sorry. Ten times per car ride, maybe? There is no lying to yourself when you have an anxious, echolalic child. You will relive your mistakes as many times as your child needs you to relive them. You will hear yourself how she heard you–how cold and mean you sound. And, hopefully, you’ll learn something in time to prevent it the next time around.

What took me way too long to get, and what I finally, finally realized tonight is that we *might* be able to use echolalia as the linguistic bomb squad. At bedtime on particularly difficult days I noticed she would start doing her favorite scripts (usually a piece of new and interesting information repeated over and over) as a means to calm herself and prepare her mind for bed. No different than counting sheep, really. So we were cuddling and chatting, and I asked her a question that was open-ended and difficult. Sure enough: rocking, agitation, upset. Immediately, I prompted her latest favorite script: “What kind of camel has one hump?”

“A camel with one hump is a dromedary. A camel with two humps is a bactrian. Camels eat grass and drink water. Camels store water and fat in their humps.” Repeat. Calm. Cuddling. Happy goodnights.

So from now on, before anything else, if I see that she’s really upset I’m going to trigger her favorite scripts as quickly as possible. We do a lot of sensory work as a part of occupational therapy, which lets off a lot of steam and allows her to regulate really well. But maybe, just maybe, echolalia could be the next best tool in our box.

Follow The Bouncing Ball

Another Moira story, because it was sweet and I don’t want to forget it.

Moira attends a baby gym class and has since she was scarcely crawling; there’s some organized song-and-dance but mostly they roam free on the gym equipment.

It should surprise no one that Moira combined today’s activity–jump from one tall foam block to a low one, then do a somersault on the low one–into an aerial front flip that I had to course-correct in midair to keep her from landing on her skull.

Anyway, toward the end of class they get out the soft sensory balls for basic chasing/throwing/catching. They come in different colors and sizes, but there’s only one purple ball in the set of smaller nubbly ones. It is hotly coveted by all the kids, and I see why–in a sea of faded primaries, this particularly rich shade of purple stands out.

One of the little girls we’ve come to know was crying–she had been bumped and fell down, and it triggered a big upset. She got past the point where she could control it; it was just one of those crying spells they lose the ability to manage. Her mom was holding her.

Moira looked at the little girl and her miserable little sobs, and looked around. Her eyes fell on the little purple ball as it bounced out of the scrum. She darted over, picked it up–eyeing the other kids approaching her–and ran over to the sad little girl. Moira pulled on the girl’s shoe and offered up in comfort the finest gift her toddler brain could conceive. The gift was taken, but the girl’s grief was too great–the ball was put down, and they left to calm down outside. Moira shrugged it off, took the purple ball, and toddled over to a hoop and slam-dunked it through the center.

My darling Moira, you have two rare and precious gifts: the compassion to see suffering and want to fix it, and the confidence to shake it off when your plan doesn’t go quite accordingly. You’re not yet two, but you’ve figured out something some people never learn. I see great things in you, my little fireball.

Butterfly

Last week Maggie began Reception Year at her lovely Montessori school, which is UK pre-k and the last year before compulsory education begins. She’s in school three full days a week, and adjusting nicely. Moira, on the other hand, made it abundantly clear by the end of Maggie’s first week that she finds my company…a bit lacking. I’m okay, I’m just…not that interesting. It’s not my fault. It’s her, not me. But since I have to entertain her, I tried a new playgroup yesterday that my friend told me about.

We arrived to a church hall with wood floors and vaulted ceilings, where the echoes of almost thirty children and their caregivers vibrated over an expanse of toys, thrift shop keyboards and phones for kids to pound, mini-trampolines, and an art table. My body locked up defensively; this is not an atmosphere I’m used to. Such utter bedlam would have been impossible for Maggie to process, and until now most of our activities have centered around Maggie’s needs, since Moira was just happy to be where her sister was.

Moira took off into the din without a look back, arms stretched wide and a huge smile on her face as if to say “MY PEOPLE! YOU’VE BEEN HERE ALL ALONG!” I kept an eye on her to see what she was doing–and to whom she was doing it, if applicable–but I really believe that she could not have cared less if I was alive or dead. Once in a while she brought me a baby doll or enlisted my help to get the art smock on and off, but she mostly tore around exploring. I had to intervene a few times: she got a little bossy with the baby dolls, holding a miniature high chair over her head as if to kosh her new playmate, and another time she got up on the mini-trampoline and hugged the little girl next to her, who was not at all pleased that Moira had invited herself up. “Sweetie, not everyone likes surprise hugs on the trampoline.”

When I told her it was snack time, she ran away to find an empty chair and started babbling to her friend. When it was time to clean, she automatically took the lead in collecting toys and then, because she is a beast of pure strength, started stacking the miniature chairs. At the very end at song time, she raced into the circle and grabbed a stranger’s hand to sing “Hokey Pokey,” again not caring where I was or what I was doing.

Today I had to go to an event, a coffee social with lots of vendors and such. Moira did laps the entire time: continuous circuits past the tables, up the stairs, down the ramps, past the food, grinning at everyone, high-fiving, talking (babbling mostly incoherently) to people, giving hugs, pointing to friends. My friend Kathleen, herself a mom of three older kids, observed her in one of her circuits and said “My God. She just…never…stops.”

And she doesn’t. That’s what makes Moira so fascinating to me. Maggie’s autism diagnosis has challenged how I think and view the world, for sure, but at her core she’s an introvert who enjoys her books and quiet pursuits. That, I can manage. I’m an introvert myself and Tom claims extroversion, but he really straddles the ambivert line. Moira is an extrovert’s extrovert. It’s like living with a tiny diapered Oprah. “And YOU get a smile and YOU get a smile and YOU get a high five and YOU! YOU GET A HUG! HEY YOU!”

Being a natural introvert has meant that learning the rules of social interaction has been hard for me. I don’t have an intuitive knack for social comfort, and not a lot of desire to learn. Moira has the knack. She moves with such easy confidence and grace; very little gets her down. She certainly understands the rules–she picks up cues fluidly and easily–which makes it more galling when she then turns around and knowingly, smirkingly flouts the ones that are inconvenient to her purposes. This is the girl who taught her Little Gym class that it was fun to slide down things headfirst instead of feet-first; she’s given boys more than twice her age who want her to get out of their way at the playground raspberries and holds her ground like she’s seven feet tall. 

I know that her nonchalance in flouting the rules and pursuing her own ends is something that needs to be tempered, but truly, I am awestruck by her. That intuitive knack for mixing it up, jumping in, and getting to know everyone–even if they don’t necessarily think they want to be known (sorry, poor trampoline girl)–is so foreign to my experience that seeing it in action from such a young age is incredible to me. She’s a crackling sparkler of a girl, hard to ignore and hot to handle.

One way or another, this girl is going to be a showstopper. I’m so glad and grateful that we get a front-row seat.

This Post is Brought to You By the Letters MRI, CAT, & ER

“And unto them a child was born, and it was decreed unto them all that thy needeth to prepareth thy shit, because thou hast no idea what havoc that child could wreak.” – Proverb I just made up

Long ago, I had my first MRI. That revealed an optic nerve that had a head-start on the rest of my body by being so thoroughly underachieving that it refused to work at all. I’ve never had much peripheral vision on my left side, which is less restrictive to driving than one might think.

The biggest issue with a defunct eye is blind spots (ha, no pun intended). If I don’t hear someone coming, they can be three inches from my face before I realize they’re there, and the shock of being perpetually surprised by left-approachers has shaved several years off my life. So it was painful, but ultimately not surprising, when Maggie ran full-force into me while I was sitting on the grass and knocked my body into the shape of an acute angle.

Immediately, I felt three huge pops in my neck. The pain flared intensely, but then faded, and I got about my business making ready to fly us to America for our vacation and to ready the house and other projects for our departure. This is busylady talk for “I ignored the odd flares of pain and headaches popping up near-daily.”

By the time we landed in Boston I was suffering a migraine so intense that I couldn’t sleep for more than 45-minute stretches that knocked down with Advil but refused to fully abate. Because I had started another medication, I didn’t immediately connect it to our little picnic tackle. What kind of person gets whiplash from a four-year-old?

People, I am that person.

After waking in the night to vomit and suffering balance loss and blurred vision while visiting friends outside Boston, we finally went to the emergency room. If you ever need to have an IV inserted and blood taken, the Lahey Clinic is tops. However, they gave me medication for the head pain–which was so intense that it eclipsed the neck pain–that made it impossible to take a full breath, and then had me get a CAT scan to rule out anything especially scary. It may be important to mention that at this time, I was sure that I at least had a blood clot or possibly was having a mild stroke, and I got wheeled into the scan room just in time to hear an orderly tell another patient “There was something concerning on your scan, so the doctor will need to keep you.”

DUN-DUN-DUUUUUUUN.

I was discharged with migraine medication, which helped for about twelve hours but did next to nothing after that. We went back to Maine, and I made it a day before I capsized, again in massive pain. Thus it was that I landed back in the ER, but now armed with this important information: the primary head pain vanished with medicine. The neck pain didn’t. And brother, I had a ten-pound baby at home, a baby with stuck shoulders and a 99th percentile head, without so much as a belt to bite and I would do that AGAIN if given the choice between that and experiencing that early Sunday neck/head pain again.

When you’re in that kind of pain, they punch an express ticket for you on the morphine train. It was a tiny dose, tempered with anti-nausea meds, and I felt well enough to finally sleep a bit. The powers that be ordered an MRI, and after a brief comedy of errors where I got wheeled around the hospital looking for a pair of pliers to remove an earring from my ear that was original from the initial piercing, I got stuffed into a tube and then suffered the itchiest nose I’ve had since my first MRI…you know, the one that revealed the bad eye that led to the blind spot that led to the surprise tackle and the green grass grows all around.

The results–severe muscle sprain, aka fucking whiplash from my four-year-old–were quick, but by that time I was in pain again. There had been a shift change, and apparently they did not write down that I am a cheap date and that I get nauseous. Years ago, when I saw Trainspotting, I thought Ewan MacGregor was exaggerating a bit when he did that head-back flop on the bed when that heroin hit his bloodstream. I tell you now that once the second dose of morphine hit me I felt it in my toes, fingertips, the tip of my tongue, and the top of my head simultaneously and I flumped straight back into a stack of pillows. My poor father, who had been volunteered to trade with Tom–who had been up since 4am tending to my broken self–so he could trot the girls out to familial obligations, had to listen to my stoned babbling for over an hour before I finally was discharged and we could go home. I was higher than the cast of Requiem for a Dream. 

After all that–and oh, God, why didn’t I deal with this earlier in the UK, where health care is free! FREE I SAY!–three days of muscle relaxers and Vicodin shaped me up right speedy, and we were able to enjoy the rest of our vacation in unmedicated peace. Except for poor Tom, because Moira came down with croup (this is two for two visits to America where she has become so afflicted. I suspect she’ll fare better in Morocco) and I was still absolutely useless from the barrage of drugs in my system. Since he was the only functional parent he ended up back in the same ER that evening for steroid shots. He slept almost the entirety of Monday, Moira slept a bit herself, Maggie ALWAYS sleeps in, and I was cruising on Vicodin. It was like a mini-episode of “House.”

So let that be a lesson to you: if you have children, and especially if you have a blind spot, put some damn bells on your kids.

Pink

Maggie’s 13-year-old babysitter has been coming to play. It’s a way to get her engaged with another “kid” who can be a friend to her without the noise and stickiness of someone her own age, and it lets me off the hook for an hour. The sitter has cotton-candy pink hair (I hear it will be peach quite shortly) and otherwise looks/dresses like Jane Lane from Daria. Basically, she’s cooler than I ever could have hoped to be as a teenager. Her hair was darker blue last time Maggie saw her, so when she walked in today Maggie gasped audibly.

“YOU. You’re…YOU’RE LOVELY.” And then kept whispering “You’re so beautiful. I love you.”

Come for the paid gig, stay for the self-esteem boost. And I suspect by the time we hit 18 with Maggie, we’ll have bought a Hot Topic’s worth of Manic Panic hair dye.

The One Who Knows

We listen to Dar Williams a lot in the afternoons. She’s mellow, which we need. And usually, she lines right up with what’s going on here.

“Time it was I had a dream
You’re the dream come true
If I had the world to give
I’d give it all to you.
I’ll take you to the mountains
I will take you to the sea
I’ll show you how this life became 
A miracle to me.”

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“All the things you treasure most
Will be the hardest won
I will watch you struggle on
Before the answers come
But I won’t make it harder
I’ll be there to cheer you on.”

– “The One Who Knows,” Dar Williams

How to Make Chicken Stock in Four Days

Prologue (Sunday): go berry picking. Freeze multiple bags. Realize you are running out of room in your freezer and that there’s a chicken carcass waiting for you to learn to love and trust again after your first batch of stock came out poorly. Plan to make stock the following weekend.

Day 1 (Monday): Car-related ridiculousness of your own making occurs; scrap plans to leave house for the day. Get out the stock pot (no, not THAT one, amateur; the HUGE one) and throw in all the leftover frozen chicken and veggies you can find. Add herbs de Provence, salt, pepper, and a lot of garlic. Leave out bay leaves because they make you sad. Redeem your foolishness with regard to the car by putting beef stew with a tomato sauce and Mexican seasoning base in the crock pot.

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Simmer (not boil!) on low for eight hours. Realize somewhere around hour six that the broth is WAY too sweet and that you have over-carroted the broth. Skim out loads of carrots; replace with more celery, onion, and garlic.

Decide after dinner that broth is still a mite too sweet so pour in the spicy tomato crock pot broth from the beef stew, in a move you consider to be both genius and also probably a really awful idea. Simmer for a bit longer, and then strain out the large vegetables and bones with a colander. Reorganize refrigerator to accommodate giant stock pot.

Day 2 (Tuesday): Wake to find that husband has reorganized the stock into three separate containers to mitigate the risk of the refrigerator popping open. Skim fat off three container’s worth of chicken stock; replace in fridge and repeat throughout the day. Realize ain’t nobody got time to can tonight; re-refrigerate. It’s fridge-stable for a few days, certainly.

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Day 3 (Wednesday): Realize that what happened Tuesday goes likewise for Wednesday and Google tells you that you can refrigerate for three days without worry. Tom has already used one of the containers to cook two of the week’s meals. 

Day 4 (Thursday): Prepare jars, lids, and pressure canner–NOT a regular water canner. You cannot process low-acid food in a water bath. No. You can’t. Why do you hate science?

Strain your stock. Try it twice on your own before realizing that you need a second pair of hands to hold the clean cheesecloth steady. Attempt it once again after Second Hands Tom realizes he needs to hold on tighter. Heat broth; ladle into clean jars. Try a small mug of it–it is the perfect color, saltiness, with just the mildest little hint of spice at the finish. Become very impressed with yourself.

Tear kitchen apart trying to find pressure canner manual. See if Presto has PDF copies on their site. They do! Download a corrupted file. Try again. Get proper file with correct procedure. 

Begin to boil; put pressure cap in place. Hint generally that Tom should come in to do the valve checking because even though you’re sure you’re following directions the insurance payout for his life is much higher than for yours. Reflect that Tom is still young with cute kids and a solid job and he could probably replace you pretty easily. Refill wine glass.

Boil according to the Ball book at ten pounds of pressure for juuuust over 20 minutes (just to be sure). Later, once everything has cooled and you’ve recovered from the shock of removing the pressure cap too soon (Tom SAID it was okay to remove it but he lied was incorrect), remove your jars.

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Marvel at the eight jars. Realize it’s almost midnight. 

Go the hell to bed.

Parachutes

July, 2012:

Everyone huddles under the tents. It’s intermittently rainy; typical English picnic weather. The entertainer hired for the preschool’s end-of-year party brings out his props, including a large parachute, stitched in garish primary-colored panels. Maggie will have nothing to do with it. She won’t acknowledge the group; she runs in the opposite direction from the crowd, visibly distressed. We don’t force her. Her wishes are clear. With the rain, there’s really nowhere to go–nowhere to which she can escape. We leave early, confused and aching.

July, 2013:

The high anxiety of these gatherings has lessened over the last year. Knowing more than we did, knowing more about how Maggie ticks, makes it possible for us to understand why certain situations are so difficult. We never forced her to stay somewhere that she was unhappy, but now with that understanding it makes it easier for us to see the sources of her anxiety. The flapping parachute, the screaming kids, the entertainer shouting instructions…it’s too much. 

Today was the end-of-year party. The weather was glorious, Moira is mobile enough to enjoy the school playground, and with such perfect weather we knew there would be plenty of chances for her to find a comfortable spot to be alone without getting washed away in a Yorkshire downpour.

Same entertainer; this time he brought juggling implements. Maybe he did last year, but I know I wasn’t paying attention. They caught Maggie’s eye, and then he gathered the children around for games…with the parachute.

She stood. She inched closer. She examined. The entertainer told everyone to grab a handle and whip the fabric high.

I held my breath, and then, unable to hold back, said “Maggie, there’s an open handle there.” 

Maggie drew up her shoulders, straightened her spine…and stepped forward to take the handle.

The entertainer counted off to three. She counted along. He called for the boys to run under. She waited and gleefully helped trap her mates under the parachute. He called for the girls to do the same.

Maggie ran into the scrum, giggling and shouting, and she danced.

She danced. In the middle of a mass of thrashing, squealing preschoolers under an ugly nylon net, she danced.

I found Tom and pointed to what I was seeing. He saw it too. And then I had to leave, because the lump in my throat had moved into my eyes and the threatened watershed could no longer be denied, and I cried in the bathroom alcove with the miniature toilets because I had just seen one of the bravest things I’ve ever seen in my life: a four-year-old girl deciding to step forward and be wrapped up in a parachute under a flaming July sun.

And then she danced.

 

For My Girls

Oh, we said our dreams will carry us
And if they don’t fly we will run
Now we push right past to find out
Oh, how to win what they all lost

Oh ah, oh ah
We know now we want more
Oh ah, oh ah
A life worth fighting for. – Santigold, “Disparate Youth”

Texas state senator Wendy Davis’s filibuster. The death of DOMA and Prop. 8. People standing tall for equality and autonomy. It was a great day.

We aren’t done.

Because the “T” in GLBTAP is so misunderstood, and the “P” hardly recognised at all, we aren’t done.

Because the attacks on female bodily autonomy will never stop taking new forms, we aren’t done.

Because marriage is not the only issue with regard to GLBTP prejudice, we aren’t done.

Because there are still people who shout with joy at the death of DOMA and excoriate Paula Deen, and champion equality, who then turn around and casually drop “retarded,” “retard,” “fucking retard,” or “fucktard” into conversation without seeing their hypocrisy, or suggest that the disabled are better off dead, we aren’t done.

The work has been strong, and today we should cheer. We should celebrate. But we should remember that we aren’t done yet.

There is much to be done. Let’s go do it.