For Good

Dear Maggie,

This is birthday letter is quite overdue, but there’s a good reason for it. We spent most of your birth month visiting your grandparents and great-grandmothers in Florida. You turned five there, and it was the perfect way to finish off the amazing ride that was age four. I’ve been trying hard to think of a song (isn’t that how I always frame these things?) that encapsulates the year and how it touched us all. 

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The first thought that comes to mind is, of course, “Let It Go.” The world was swept by Frozen fever, and we were no exception. It was the first movie you saw in theaters; sitting on my lap and enjoying popcorn, you sang when “Let It Go” came on and declared yourself Olaf. (Your sister insists on being called The Princess Of Arendelle, which is another story.) But that led to the second song, and much more appropriate inspiration for this post: in an effort to break the endless cycle of Frozen YouTube videos, we showed you Idina Menzel’s fantastic “Defying Gravity.”

And my sweet girl, you were hooked.

I’m through with playing by the rules
 / Of someone else’s game / 
Too late for second-guessing / 
Too late to go back to sleep / 
It’s time to trust my instincts
 / Close my eyes and leap! It’s time to try / 
Defying gravity
 / I think I’ll try / 
Defying gravity


And you can’t pull me down

The theatricality of the video, the flying, the soaring lyrics–you were beyond moved. This is your song, baby girl. This is what you are about. When we had you we took the huge jump of faith into parenting, and sure enough, with you leading the way we are all soaring. I love that the song embodies everything the last thirteen months have been about, and I think you love it too. You sing softly (and beautifully) to yourself all the time, and I could hardly believe it when I realized this verse was the one I was hearing most often:

I’m through accepting limits / ’cause someone says they’re so / Some things I cannot change / But till I try, I’ll never know!

So many people have tried to tell me that echolalia, the means through which you construct a lot of your speech, is just rote memorization without meaning. I don’t believe it. How can I, when you’ve blown me away with it before? How could I take that affirmation of spirit as meaningless when compared to the depth of your accomplishments over the last year? (Least of which was performing as the Donkey in the Nativity play at school.)

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When you turned four the sight of a blank page filled you with panic. When you turned five, our home had been quite literally papered in your intricate, beautiful, detailed artwork. 

When you turned four, you had moderate/severe fine motor delays. When you turned five, you were putting together 500-piece Lego sets and asked for this awesome set for next Christmas.

When you turned four, we could not find a way to help you reconcile a fear of a particular skill. When you turned five, through your strength of will (and a few Lego bribes) you had overcome your fear and mastered it.

When you turned four, you could not ask or answer a “Why?” question. When you turned five, you had begun to ask and answer, and every single “Why…?” takes my breath away. I cannot get enough. 

You walked up to a little girl to ask her to be your friend. She said yes. You jumped into a fray of screaming, cavorting children…and you danced.

You were through accepting limits. You were through with the bullshit “can’t/never/won’t” and you turn it all on its head. You have a brilliance and depth that has, and I say this without a hint of hyperbole, actually stopped people in their tracks. You have won the hearts of several professionals on our team and left them staring, captivated. You have reorganized what everyone we know thought they knew about who you are and what you can do. 

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To those who’d ground me / Take a message back from me / Tell them how I am / Defying gravity / I’m flying high / Defying gravity / And soon I’ll match them in renown!

That’s your song. That’s your story. That’s your legacy. And you’re only five. How amazing you are, and how deep your power runs.

That’s your song, but since part of these birthday letters are telling you about what you meant to me during this part of our journey together for you to read later, I have to include what I have come to think of as Our Song. And once again, it was the year of Idina Menzel–this time with Kristen Chenoweth.

Because as hard as I try, I can’t imagine you in greenface–you are a Glinda, bright and sparkly. And this line more applies to me anyway:

I’m limited. Just look at you, you can do all I couldn’t do…

I cannot–and wouldn’t try–to claim perfection as a mom. I know if I tried I wouldn’t be believed, but I also know you would remember the truth; the times I was immature, or reacted poorly, or lost my temper over something silly. I’ve been over the legal age of majority for twelve years now and a mother for five, but it has just been in this last year that I’ve started to feel like an adult. I’ve started to shed the authoritarian hardass image I once thought a parent had to project in order to become the kind of mom I actually want to be. And it’s because of you.

I’ve heard it said / That people come into our lives / For a reason / Bringing something we must learn / And we are lead to those / Who help us most to grow if we let them. / And we help them in return. / Well, I don’t know if I believe that’s true / But I know I’m who I am today / Because I knew you.

The process of rebuilding that I’ve spoken of in the past is still ongoing, but as you go and defy gravity in your own way I realize we have given each other a gift. So often, I see parents and families disappointed in their children for reasons big and small, and again so often it revolves around expectations. The expectation they’d have a certain orientation, a certain value system, a certain lifestyle. While in some cases the child has made bad choices, in others the hurt has everything to do with the parent projecting their expectations onto a tabula rasa that had the audacity to grow up and become a person of their own. You have shown me the hurt those projected expectations can cause–a realization more common to parents in their 40s and 50s, I think–and in turn I hope that I can live up to the kind of true acceptance and unconditional support, advocacy, and cheerleading you need. The kind of mom you deserve. The kind of mom that makes you know that–even if you make choices that make my head hurt (you will) or if I don’t always understand you (I won’t)–from the second you were born, you have always been loved and wanted for who you are.

 

So much of me / Is made of what I learned from you / You’ll be with me / Like a handprint on my heart / And now whatever way our stories end / I know you’ll have rewritten mine / By being my friend

Who can say if I’ve been changed for the better?
I do believe I have been changed for the better.

And because I knew you…

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Because I knew you…

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Because I knew you
I have been changed…

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For good.

I love you. Always will.

Love,

Mama

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.