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”

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20 thoughts on “I’ve Just Seen A Face

  1. I love my Maggie (and the whole McConnell family for that matter). And I LOVE that I will carry that song in my head through the rest of a very busy day! We’ve been celebrating Maggie all day long! xoxox

  2. You ate both awesome..Maggie is a lucky girl…and a beautiful one. She will do well in the world….her happiness is infectious… good for all of you!!

  3. Thank you for your personal story and putting words to what it means to have a child who is autistic. My autistic students have been some of the most beautiful people I know. Working with them also brings me some of my biggest smiles.

  4. Deanna….THIS is one of the best written pieces I have read, relating to Autism!! I dealt with these wonderful children in my classroom (by choice!) and became well educated in how their brains perceived lessons, sounds, stimulations, and other children each day. You have done an amazing job of expressing that understanding, patience, and love are the key ingredients that children with Autisim strive for. Bless you for sharing your insight, your feelings, your denial, your new “foundations”, your education, your strength, and your joy. Maggie is a beautiful little girl who will flower and succeed in this world, with your guidance and love!!

  5. Lots of tears over here. You are so effing talented. Thank you for sharing Maggie with us, and your beautiful words.

  6. God only allows his special babies to be cared for by a select few good mommies and daddies. You are blessed forever and God is smiling knowing Maggie is in the best of hands. God Bless you all!! Jeanne( mommy of another one of God’s special babies)

  7. Once again,you have touched my heart,my soul, my whole being.Yes, Grampy saw the beautiful face that is Maggie.

  8. Deanna, thank you for sharing this with us! I enjoy so much following the adventures and experiences of you, Tom and the girls. You’re an incredible writer, parent and person.

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  10. Coming from a professional who works with autistic students (or “students with autism” as some would prefer) I’d like to applaud and thank you for not wanting “to cure” your child. Many parents believe that professionals are holding a magic pill and if we just down time with their child, exorbitant amounts I time in some cases, that their child will be cured.

    Opinions of Jenny McCarthy aside, she said in the book she wrote about her son and his receiving an autism diagnosis that she was told by the diagnosing doctor, “He is still the same child you walked in here with.” Truer words could not be spoken to a parent hearing any diagnosis.

    Beautiful post. Thank you.

  11. You need to meet my friend Gail, another happy Mom with a happy child who also happens to be autistic. Her son Gage is a bit older than your little angel, so they’re dealing with schooling and trying to keep things happy for him there (her son is doing great in school, btw, its the grown up side that’s tough, getting the teachers&funding that’s needed). Anyway, you guys may be able to learn from one another.

    http://m.gagerufus.org/#!Contact%20us:|contact_page

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