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.

I’ve Just Seen A Face

I’ve just seen a face / I can’t forget the time or place / Where we just met

This is not a sad story.

Two months ago, a child psychologist confirmed what we had once denied but had long since come to know was true, and thus it was that “autism” became as commonplace a word in our house as “Netflix.” And as it so happens, World Autism Awareness Day is today–eight days before Maggie’s fourth birthday.

She’s just the girl for me / And I want all the world / To see we’ve met

Mmm, mmm, mmm, mmm mmm mmm

She’s helping us plan quite the celebration; it will be Madeline-themed, down to a hat-shaped cake that she can’t stop talking about. (“DADDY WILL MAKE A MADELINE HAT CAKE!” No one is happier about life than a little kid with her own cake.) But in honor of today, I’m celebrating her a little early. If you read other posts today about autism awareness, you’re undoubtedly going to come across some disquieting things. There is an enormous cloud of ignorance and stereotypes around diagnosis, labels, and what autism means in our society.  There is so much fear. But there’s none of that here. Here, close to my daughter’s heart and mind, I can talk about what was left after we turned away from the confusion surrounding an autism diagnosis:

Joy.

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Had it been another day / I might have looked the other way

And I’d have never been aware / But as it is I’ll dream of her tonight

La, di, di, da di di

It’s something about Maggie’s eyes, I think. She’s often so quiet; she’s constantly observing. You wouldn’t know how active her mind is. But my grandfather saw that joy, that burning intensity she shares with those she allows into her sphere. If you didn’t want to see her, you wouldn’t–she watches from a safe perch. She protects herself. But when you see her–truly see her–you know that she burns with love and light.

I have never known the like of this / I’ve been alone and I have missed things

And kept out of sight / For other girls were never quite like this

La, di, di, da di di

We see her intensity and we have seen what it’s like when the world becomes too much for her. When things are too fast, and when things feel wrong, we think we can get a glimpse of how hard that sensory overwhelm can be. That part of autism is well covered and often played for tragedy points in popular media.

But what of joy? Is it not reasonable for me to believe that because she feels and senses so intensely that she is able to experience happiness on a plane that I can only imagine? I believed that before I knew for sure that it was true; I see her taking joy in things that escape my notice entirely. A sweater that I think of as simply “soft” melts under her hands; the crunchy crackle of extra-strong garlic bread with a bit of sea salt brings fulfillment to her that it does not bring to me. Her senses bring her such a vivid experience. She consumes life with vigor and gusto, and in that vitality I see that Maggie has within her an incredible spring of delight–the capability for rapturous happiness.

So let us first be aware of this: my daughter is autistic, and she is happy.

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Falling, yes I am falling / And she keeps calling / Me back again

And are we, her family, happy? Incredibly. I have written much about fear and uncertainty here and about panicking over the future. But we see now what incredible shades of privilege and ignorance we had over our eyes: that our neuro-typical ideas of happiness were the only standard, and that all else would measure up and be found lacking. That she had to conform to the world to be accepted. These attitudes are not only inappropriate–they are ableist and wrong.

My background is writing, not engineering, but even I know that a building built on uneven, unprepared ground cannot stand for long. To build that strong foundation for Maggie–to be who we needed to be for her–the ground first had to be leveled and the landscape permanently altered. Being good parents to her has meant ripping down everything we thought we knew about human communication and interaction, facing biases and ignorance of our privilege that we never knew existed within us, and rebuilding ourselves as parents (point number 5 is especially important) from the bottom up. It has hurt. It has not always been pleasant. But it has been absolutely necessary in order to see that autism is something inextricably linked to all of Maggie’s senses, and to her sense of self and the world.

We owed her full acceptance. We owed it to her to celebrate her joy, and to return her joy with our unconditional love. Maggie does not have an illness, and she is not broken. We do not seek to cure her, but to push for acceptance for her differences and for recognition for the unique, necessary worldview she offers.

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To wish for a “cure” is to wish that our daughter–who she is now and who she has always been–did not exist and that another chapter with another child could be written instead. (If you read no other links from this post, read this one.)

And because this is not a sad story, that chapter of rejection and resentment does not–and will never–exist. This is the story of Maggie’s face, full of intensity and happiness and anger and all the fun and flaws of human existence. She is the child I dreamed of, my firstborn; the child who was a part of my body for 41 life-altering weeks. I could not conceive of my life without her thirst for the world.

I’ve just seen a face / I can’t forget the time or place / Where we just met

So today’s word: awareness. With a diagnosis rate at 1 in 88, we need a national conversation with autistic people, their friends and families, and supportive organizations to find the best way to support and accommodate those on the spectrum.

But we need more than that. We need acceptance. Accepting the true reality of her life: full, good, happy, with friends and loving family. Accepting the possibilities of her future: friends, hobbies, interests, a job, a partner or children of her own one day if she so desires. Accepting that she is not scary or sad, and accepting that her existence is not a tragedy. Accepting her joy, and never implying that if she would just/could just/if only, she might be happier or have a better quality of life. She already is happy; she has a good life. So do a lot of people who go with their humanity unrecognized and unacknowledged.

She’s just Maggie, our Margaret Kelley: an autistic person, and a happy person.

Let Maggie be the face you remember and talk about today. Remember that she is not the one who needs to change.

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Remember that her story is a happy one…and that if the world is willing to think “acceptance,” it will stay that way.

She’s just the girl for me / And I want all the world to see we’ve met

Today’s comment policy:

There is enormous debate between autistics, medical professionals, and parents over labeling and appropriate language, specifically person-first (“has autism,” “person with autism,” separating the person from the disability) vs. identity-first (autistic). After reading many of the arguments on both sides, it was the words of severalseveral blogging self-advocates and a parent raising a future self-advocate (each of these five individual links is well worth your time) who helped us make the decision to refer to Maggie as “autistic” instead of “person with/who has autism.” Many self-advocates/activists prefer “autistic,” and they have been our awesome guides through these early days; we respect their decision and we would be proud to see our daughter standing with them someday. Thank you for your understanding.

Likewise, there is a lot of controversy about autism’s various causes and treatments and there are numerous places throughout the internet where you can research and discuss them with others. While it may be one day, today this blog is not among those places–today is about celebrating our baby girl. 

*Italicized lines are the lyrics from The Beatles’ “I’ve Just Seen A Face”

In Color

The scene: at home on a Friday night, trying to gauge interest in a Disney World trip by seeing how the girls reacted to Disney promo videos on YouTube. Maggie got bored and brought me a book, and then pointed to the main character.

“What’s her favorite color?”

The question piqued my interest. Maggie asks questions and has speech, but a lot of it is scripted. She has asked what we are doing, what we are wearing, where are we going, but never about our personal thoughts. I still wasn’t sure if this was a rote question, but I answered.

“I don’t know, but she is wearing a lot of blue!”

“It’s white.”

My breath caught again. I looked at Tom to see if he was paying attention. He was. And then…Maggie asked me. “What’s your favorite color?”

“It’s purple. What’s your favorite color?”

“White. Purple. Pink.” (Later in the evening she told me “black.” She just loves them all, I guess.)

“What’s Daddy’s favorite color, Maggie?”

“Blue!”

“It’s green, sweetie.”

“Oh, green! Right!” The “right!” I recognized from “Mickey’s Clubhouse” as a reassurance that she knew the answer was correct. She looked at the television, where Mickey and Minnie were frolicking. “What’s Minnie’s favorite color?”

“She wears red and pink,” I said. “What do you think it is? Red or pink?”

“Pink.”

“Maggie, what’s Mickey’s favorite color?”

“It’s red.”

Tom and I looked at each other, both aware of how in awe we were of Maggie. The scene changed, and her attention redirected to something else. And that was all.

And that was everything.

Leap

And the verdict on the car is…

…nothing!

We decided to pass on the friend’s minivan; there’s nothing technically wrong with our car, other than the fact that it is cramped and wee and getting Moira in and out of her car seat has left a semi-permanent welt on the back of my head. Waiting a year will allow us to save a little more, check our options, and see what we really want.

And can I be honest, here? Let’s be real.

It’s not about the car.

This frustration, irritability, overreaction to a perfectly lovely and functional vehicle that I’m actually grateful to have? It’s an outlet. An easy target. A convenient distraction. It’s so much easier to sit down and research cars and spend an hour here and there on Edmund’s, spending money in my head that I don’t actually want to spend, simply because it is an easy way to ignore the fact that for the last four months, we have been overwhelmed. have been overwhelmed. And I’m not proud of any of this.

We know, now, after umpteen million appointments (and several more to go) that Maggie is almost certainly on the autism spectrum, which is news and yet not news. We’ve known for a long time that something was different–a very long time. Getting a diagnosis, as I’ve told everyone who will listen and surely some people who are very, very bored by the topic, is the key! A silver key that will unlock a room, wherein therapists and doctors and a plan are waiting. I have been surface smiles and cheerful, so glad–just so goddamn glad!–that we were finally going to know. There’s going to be a plan! A plan, I tell you!

Then three things happened.

One: Moira had surgery in the midst of this silver-shiny spate of denial. Two: one of my dearest friends–the one who encouraged us to have Maggie evaluated in the first place–found out that her daughter (younger than Moira) would need to be tested for cystic fibrosis as a possible cause for her failure to grow properly. (Spoiler: the test was negative, but we didn’t know it then.) And three: Tom’s friend asked us for a list of baby product recommendations.

So innocent, that last, no? Just a recommendation for carriers and maybe some swaddling blankets. But it broke me. I cracked. As I started writing the recommendation email I started hysterically laughing. Actual, ugly hysteria. And I wrote, and fortunately, deleted, the following (though I did post it to G+): “Autism. Holes in major organs. Cystic fibrosis. I hate to be a downer to new parents, but holy shit. There’s nothing I can tell you that will really prepare you for what life is going to throw at you. There isn’t a swaddling blanket in the world that can make any of this okay.”

And isn’t that the truth. The pattern on that lovingly chosen swaddling blanket for Moira? Bloodied from the recovery room. The darling little tam hat I picked out for my friend’s daughter in Scotland? Gonna look real cute in the waiting room at her umpteenth doctor’s appointment for a disease that would all but guarantee her parents will outlive her. And what about that plan, eh? That plan that a diagnosis–upon which we are still waiting–would give us? What did it really matter? It could work. It could not work. And what would “Work” look like? What if we could never have a back-and-forth conversation with our daughter? What if we went bankrupt–literally, actually bankrupt–trying? Haha! Go ahead! Pick your nursery colors! Think about that car seat pattern instead! Spend hours researching new cars and obsess over the things you can control, because it’s all going to fall apart on you in the end! I laughed until my throat was raw and I wanted to throw up, and spent the rest of nap time in the hottest shower I’ve ever taken.

Clearly, this was a grim time.

It’s better now. The test came back negative–no cystic fibrosis. The bloodstains washed out, and Moira’s scar is fading. Maggie is wonderful and will always be wonderful. And I’m trying not to bore people with my shiny-silver denial, because I know I’m not fooling anyone. I’ve caught a glimpse of myself a few times in the mirror this year and I can see the strain–eyes puffy and threaded red from insomnia, knots in the side of my face from where I clench my jaw without realizing it, shoulders sinking and only kept afloat by emails and texts from the three or four people with whom I’d entrust with the information that I’m about to be eaten alive by the panic rat. Don’t take it personally if I’ve shut you out of that information; that list of confidantes doesn’t always even include my husband, although we’ve had a few knock-down hash-outs trying to find our way. We’re better than before; dented, bruised in a few spots, but better. We are being tested in fire and being made stronger; that can’t come without occasionally feeling like you’re burning alive.

Having a child is such a leap of faith; it’s the ultimate act of optimism. It’s a promise to yourself that you think the future will be bright enough, worthy enough, of this pure and unblemished soul that you’ve endeavored to bring up in the world. And it’s a hopeful thing to think about yourself: that you’re also worthy and will be capable of being the parent that child deserves. Along this year of tragedy and ugly surprises and gut-punches I’m figuring out how to get that faith back and reclaim that optimism and hope for the future. We are getting there. I’m getting there. The silver-shiny denial is being slowly eroded and replaced by titanium. We’re actually, truly on the road to feeling worthy and okay again.

And maybe, just maybe, if we last and persevere and, kicking and screaming, find our way? Next year we’ll treat ourselves to something literally shiny.