Traveling Monkeys celebrates 1000 Ausome Things #AutismPositivity2013″

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And here we are: the end of my first April as an allistic (ally) parent of an autistic child. This seems like a fantastic way to close it out.

We’ve covered joy as a positive to autism, and also how Maggie’s school protects her childhood via play. What are some of the other upsides?

- No lying. Ever.

- She no longer naps, but voluntarily retires to her room in the afternoons for what I call “Quiet Time” to her and mentally refer to as “Spoon Polishing Time.”

- I can also leave her with a 50-piece jigsaw puzzle and get myself a whopping 20 minutes of quiet. She’s also pretty damn great at “Where’s Waldo?” 

- We’ve discovered she and I have a mutual overwhelming love of Theraputty.

- The community of parents and young adults we’ve met via this blog. Sweet Maggie, there is a whole world of mentors and friends out there for you.

And tomorrow is May 1. Let’s talk about hair or something next, shall we?

The Protection of Play

At Maggie’s nursery school (and I have no idea if this is a nation-wide document or just her school) they have something called an “individualized learning plan” for students who have specific developmental areas on which we want to focus. For Maggie, this means the development of gross motor skills, fine motor skills, and the idea of give-take/turn-taking/other social activities. Her occupational therapist and speech therapist are advocates of play therapy and natural learning environments, and have sent packets of ideas and info to us and the school to implement. This is beneficial, because while she sees the actual therapists rarely, we can ensure that every activity we gently direct her toward has meaningful purpose in her development.

In layman’s terms? Maggie’s ILP is basically this: be a kid, and be a kid as hard as you can.

There’s a climbing tree at school, and a few other tall climbing structures. Climb that tree. There are board games to play and scenarios to play pretend with other children. Play those games. Play pretend. Fine motor enhanced by jigsaw puzzles, stamping, and learning independent care in the practical Montessori environment? Do those puzzles. Make any art you can. Learn to clean and tidy.

Except now, that’s all in a learning plan. It’s a binding document with set goals. Do you know how cool this is? There is, in writing, a statement that says she HAS to climb and have fun and that everything, everything that is fun about being a kid is now a mandated part of her education.

In this age of standardized testing, homework in kindergarten, climbing obesity rates, children becoming literally addicted to screen devices, I find myself so grateful. Grateful for this amazing nursery school, through which she can attend Reception Year, grateful for the funding they’ve found for a one-on-one aide to make sure she meets all her daily goals–climbing the tree! Playing games! Creating and pretending!–while under loving care. Reading, writing, arithmetic…those are all essential, but can come later.

I’m grateful that with her diagnosis, this plan has come together, and I’m grateful, increasingly, for the diagnosis that made it possible. I’m grateful for autism, because here in this space, before the demands of primary school and the increasingly complex social network there, she is protected. Her childhood, and the good things about being a child, are preserved.

Right now, she is protected from the world by play. And we could not be happier about it.

Heehee

Some cute and funny snippets I don’t want to forget:

Maggie, singing: “Old MacDonald had a farm, G-I-G-I Joooooe…”

Moira, after being told there wasn’t enough milk at a friend’s house for her to have a cup (there was just enough out to have with tea), pointed indignantly at the door to the kitchen. She then brought me by the hand, stood underneath the counter, and pointed again while looking at me like “Woman, I’m not trying to hear your excuses.”

Maggie, offering a toy skittlepin (bowling) to the play group leader: “Would you like a glass of wine with dinner? No? [looks at the pin] The bottle instead?” 

TMI warning ahead: 

Moira, stripped of her shirt and pants for the meal, walked into the kitchen right after dinner while we were cleaning up. She handed her diaper to me right as Tom picked something up and said “Hey, what’s…NOOOOOO OH MY GOD.” Moira, for her part, pointed at her naked bottom and yelled “Hey! Hey! HEY!”

These kids crack me up.

The Map Women

We interrupt Autism Awareness Month (OMG I AM AWARE, GOSH) to bring you a breaking news bulletin: I am a bad feminist. Somewhere in the last seven years, I’ve grown very, very comfortable with letting my husband take the lead when we travel. He’s Map Guy; He Who Reads Directions. I am the Keeper-Aliver-of-the-Spawn–I make sure everyone’s blood sugar is stable and naps are administered in due course. Normally this works out okay, but this last weekend I went to Amsterdam with an old friend…who is also, at least in this specific area, a bad feminist.

Amsterdam…the weekend of 4/20…with no sense of direction. What could go wrong?

It started out auspiciously enough; our flights were too early to take the bus and our car service upgraded us to a Mercedes sedan for free. I for one appreciated having heated seats and a toasty bottom. The problem was that my friend and I were booked on different carriers, and her carrier canceled her flight without sending her any notification at all. Let that sink in a moment. So in order to make sure she actually made it to Amsterdam at all, there was much running back and forth between our carriers (which were at diametric opposite ends of the airport). We got on the plane pretty tired. 

Luckily, it was only an hour to Amsterdam…but then…Schiphol. Have you ever been to Schiphol? It is BONKERS. You’ve never seen so many people carrying tiny bottles of liquids in your whole life. We got turned around because we were talking, didn’t have enough change for the train ticket machines, and THEN had several moments of panic because we couldn’t get the ticket machines to accept “Centraal Station” as a destination.

For the record, it’s in the computer as “Amsterdam Centraal.” And now you know.

Once we got off the train, there were two directions we could go in order to get to our boat hostel: the correct way and the incorrect way. We managed to go the incorrect way. Finally, covered in drizzle, we managed to get our stuff to the boat and back out the door to the trams so we could go to a museum and do all the touristy stuff we had planned.

It took three different maps, a tram, and a few hours on rented bikes but we finally figured out the city–no thanks to Lonely Planet. In the past I’ve had nothing but wonderful things to say about their books but their Amsterdam app and the 2012 updated Amsterdam guidebook were full of erroneous addresses, useless maps, and the app was difficult to search. Seriously. It wasn’t only that we were incompetent. You’d think a city laid out on a canal grid would be easy to navigate, but the three maps we had made it really difficult to get a coherent plan together. 

In the end, we did not die, nor are we still lost and wandering Schiphol trying to leave the Netherlands (although with all the security checks I had to pass, I sincerely doubt they’d let us stay). At some point I shall tell you about the interesting things we saw and my new campaign to get Tom to buy a family three-seater bicycle, but for now I am going to start studying Google Maps for our upcoming cruise. I’d like to be the one who tells us “Oh, I totally know where we’re going” this time.

Four

Oh, my dear Maggie. What else can I say that I haven’t already said this month? Let’s just talk about your day instead.

You’re my good morning sleeper; I can always count on you to stay asleep–or at least stay quiet enough that I don’t hear you–until about 8am. Today was no exception, and because we had things to do you got decked out in your finery. Pink sequin baseball hat, silver glitter ballet flats, yellow long-sleeves, and the crowning pinnacle: a hot pink t-shirt that read “I am 4!” You got ready without complaint, and ate a full breakfast happily.

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Since it’s term break you got to go with your sister to Little Gym and revel in the gym area, which is essentially a cell padded in primary colors. You hung upside down on parallel bars, crashed into hexagonal rolling blocks, and raced on the balance beam–but unlike other times, you pitched in when it was time to tidy up, and you called out to the teacher by name to thank her at the end. We ran to the grocery store and then to home; you talked with your grandparents and told them “I hung upside down!” before demanding that your Nana read “Are You My Mother?” (this month’s Skype read-a-long book of choice).

With a morning full of hard work and exercise behind you, you were in an exceptionally good mood after I put Moira to bed. You played on the iPad a bit, did some jigsaw puzzles, and with some cajoling you humored me on a letter-tracing app. Quiet time until Daddy came home, again without complaint. Sushi for dinner and a cake afterward that was lit with candles that you were so excited to blow out that you high-fived Moira’s face.

In a lot of ways it was just another day, a typical every-day out-of-the-ordinary day in the life. I’d love you no matter what, but you’re just a really good kid at a really fun age. There’s very little we can’t do with you (which is how you hit a count of 11 countries before age four), you’re curious, you’ve got a great deadpan sense of humor, and hell, you’ve been potty-trained for a full year now. What else do you really want out of life?

Here’s where the day really diverged from the usual: you got to open presents. Puzzles and books from friends and family who all are head-over-heels in love with you. Hours of good times. And then there was our gift.

A long time ago, back when you and I were staying with your grandparents while your daddy had to work, I packed up my old American Girl doll Addy and all her clothes. I washed the dresses carefully and put them aside with her books and accessories, dreaming of the day when I could share with you a doll that brought me such joy as a kid. You opened up your Addy doll today–not a baby doll but a big-girl doll–and promptly cradled her, tucking her in next to you on the chair and giving her a mother’s gentle, caring kisses. We asked you what else was in the bag and the response cracked me up: “I believe there are also books in the bag.” It was so prim and professorial; the piping high-pitched tones of an infant conveying the words of a Victorian grandmother.

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It all came flooding back, though, as you pulled out each dress–the hours you and I spent alone during those four months, just you and me finding ways to pass the time, dreaming of the future (and I couldn’t have written one as good as this one, little girl), holding the doll and preparing her for the little girl at the center of my world, you and me and you and me exploring the world and finding our way together, just the two of us, and three years later the time has come to pass these things along and there’s four of us now, just us four on your fourth, but later on at the end of the day it was just Addy, and you and me cuddled up in bed.

And I tucked the two of you in after dressing you both in your pajamas, remembering all those times when you and I were one together, and let you go into your dreams.

Happy birthday, sweet girl.

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From Here

Wow. WOW.

I am absolutely blown away by the incredible response to the autism acceptance post. It is, by several numerical places, the most viewed page in this site’s mostly low-ranked history. My heart is so full knowing that by sharing our story we’ve hopefully changed a few minds and hearts about what autism can mean for a family. Working up the courage to hit “publish” and put ourselves out there was one of the most emotionally intense things I’ve done, and people, I delivered a ten-pound baby in my bedroom without so much as a belt to bite. I know “intense.”

So I guess the question is where to go from here. My hope is that some of you have stuck around by following, subscribing, or adding me to whatever feed site you’ve chosen to replace Google Reader (RIP). You’re going to get some ridiculous stories (I have a WHOPPER of a hotel fail coming up), some sad stories, some travel stories (that don’t involve hotels), and some general diary-keeping. My girls are so small, and aside from a small box with a few trinkets this blog is what I have instead of baby books.

But in the end, I keep coming back to one of my favorite books, The Cider House Rules. “In any life, you have to be of use.” Activism is an avenue I had begun to consider, but right now I know that what I need to do most is listen, and listen, and listen some more. So, I’m listening, autistic readers and allies. Please tell me: how may I be of use to you? How may I best serve you and this community? What needs to be done?

I’m also going to need to write some posts about things like my love-hate relationship with Julia Stiles’ hair and other frivolous stuff. That’s just what I do. It’s my favorite thing.

Family, travel, frivolity, life, the universe, everything, and now autism activism. We’ll take it from here together.

ETA: There are a lot of things I’ve written during the period where we were initially questioning what was going on through the actual diagnosis that I am not proud of. There is a lot of fear, anxiety, denial, and ignorance about autism on display. I’m leaving them up because I want to be honest about where we were and how far we have come–and to be reminded of how far we will go as a family. That’s why I’m tagging this under “Diagnosis: ?” too: so anyone who is also questioning will first see before the archives that we came to a great conclusion.

Please forgive my past offenses and understand that we are constantly evolving and will continue to make mistakes, but that we are operating under the philosophy “When you know better, you’ll do better.” We know better about a lot of things; keep pointing stuff out.

We’re travelers, after all, and this is a journey too.

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”