The day everything changed… and yet nothing did

On Tuesday, May 17, 2016 our Clark was diagnosed with autism. This is something that we had expected and knew was coming. What I did not expect was the overwhelming amount of information that came my way. It’s hard to know where to go or where to start. Everything in me has told me that one of the places that I need to start is right here – getting everything out there.
People keep asking if I’m OK. I am. We are no longer in ‘limbo’ waiting for something to happen and feeling lost somewhere in the system. Clark is no different today than he was on May 16th. Nothing has changed except we were given more tools to help him thrive and grow and succeed. Early intervention is key and I am so happy that we were able to get this diagnosis now, while he’s two, rather than many years down the road.
Would I change any of this if I could? No. Absolutely not. Everything about my son is genuine. You want authentic? Come see my son. He feels everything, it’s all absorbed, mixing and tumbling in his fragile little brain, then spit back out anyway he can. That’s part of the problem with autism – you can’t interpret your environment like everyone else. But it’s because of this that there is no lie with my son. What you see is what you get. His disability becomes a part of his personality, part of who he is. It’s all part of his character, his head, heart, and soul. And I love my sons character. I love his personality. Clark is a sweet, loving, caring, amazing little boy who can also be a bit of an asshole.
We had prepared and have now told our immediate family and friends. I do not want this to be a secret. I want it to be very clear to Clark and everyone that there are no tears and no shame here. This is not bad news, it’s just news. Attitudes will only change and understanding will only Don when people are open. This is a part of him. He is a part of us. It’s all beautiful.
Let’s talk about some phrases: “He doesn’t seem/act autistic” “but he seems so normal”. I know that it is meant well and I know that there is an understandable, although misguided, urge to resist diagnosis.
If you’re trying to say that you didn’t notice/recognize any signs of autism during the time you’ve spent with my son – that’s OK. The thing about autism, like with any disorder, is that it comes with preconceived ideas and everyone has had a different personal experience. But autism is a spectrum of behaviors, and every person is different in terms of onset, temperament, severity and types of symptoms. Children with autism are individuals like snowflakes, no two are the same. Just because one child with autism looks and sounds one way does not mean that another child will.
But if what you’re really trying to tell me is that you don’t think he has autism, then please consider how hurtful that might be to us, his parents. Please consider how that might invalidate all our efforts, all our battles and all of our triumphs. What you are really implying is that we’ve wasted our time and emotions and money because he’s just “normal “.
The thing is, I won’t mind explaining my son’s diagnosis. I actually love to talk about my son. I feel part of my job is to promote awareness and, hopefully, create a world of acceptance for him. But please don’t say how sorry you are and don’t tell me about the latest diet or treatment you heard about. I don’t need to hear about your friend’s neighbor’s sister’s kid who is autistic. Unsolicited opinions and advice, even when they come from a good place, are usually more damaging than helpful. Don’t tell me that God doesn’t give you anything you can’t handle and don’t even bring up vaccines. Instead, ask me what kind of treatment he is in and do I like his therapist. Offer to babysit or help me with a project. Ask what he likes to do and what his favorite things are. Ask me about my crazy schedule and how doctor appointments are going. Offer to listen or help.
I know that no matter how close I am to people, some of them won’t get my life. I know that I am hard to interact/stay in touch with. With a bipolar husband and a son with autism, my life is complex. I understand if it is too much for some people but I will learn to let go of the people who can’t handle it. I love everyone who is reading this – thank you for your interest and we are so happy to have you in our lives and on our journey.

To my sweet baby boy,
This does not define you.
You are friendly, you are outgoing, you are fearless. You are a joy to be around. Your dad and I, we will make sure we give you every tool you need to grow, learn and thrive. I can’t wait to enroll you in 1st grade and cry my eyes out that my little boy is growing up too fast. I can’t wait to see what your passions will be. I can’t wait to see you graduate high school and college and then really cry my eyes out that my little boy really is all grown up. I can’t wait to meet the person that you fall in love with. One day, maybe, you’ll make me a grandma and make me the happiest I’ve ever been to hold a baby since February 26, 2014, the day you were born.
I never thought of myself as a parent of a child with special needs. But here we are, here I am. A parent of a child with autism. We may have some hurtles we need to jump over but you, your dad, and I are no different than we were on May 16th. We have a great life, full of adventure, ahead of us. I am constantly in awe and inspired by you. You make me want to be a better momma and person. I love you more every day.
Love,
Your Momma

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soul, mind, spirit

i don’t remember things. like the names of streets that i’ve driven down a hundred times, like the stories behind holidays i’ve celebrated since i was born, like the date of my parent’s anniversary. at a family reunion, i do not remember the names of my cousins i played with as a child. for a moment, i don’t remember the name of my dead uncle’s wife.

there are thousands of large and small omissions, bits of information i swear normal people have built into their DNA: the speed of light, so-and-so’s running mate 10 years ago, the capitol of wyoming, the way treasury bills work. mostly, i’m not bothered by my mind’s resistance to what it considers meaningless, but sometimes i feel oddly off balance, like the whole world has figured out how to cope, how to master life on the grid, but me. without a memory that invests in information retention, without a memory that can remind me at all times of who i definately am, i feel amorphous, missing the unbroken black outline around my body that everyone else seems to have.

a good friend has decided that Soul is Mind, that Mind describes and encompasses the larger idea of Spirit. “you cannot Be without Mind,” she says, referring to something that includes, but is much larger than, her brain. knowing well the limitations of my own mind, i am skeptical, disapproving. “it’s the heart,” i say, laying my flat palm over my beating organ, feeling the heat grow between skin and skin, through the cotton of my tee shirt. “you cannot have Soul without heart.” i, too, am referring to something ineffable, something much larger than the muscle in my chest.

we are talking about God, i think, and memory.

she shakes her head no as i look at her, wanting to remember how she looks to me on this sunday afternoon in my living room with the sun streaming through my big windows. my mind ticks away, registering her waffled army-green tee shirt, thick silver hoops, and brown, almond-shaped eyes. i sum her up, compare her today with her another day, piece her psyche together from all the strands of memory. my eyes do all they can and then, as if considering a collage by Bearden or a painting by Van Gogh, push the task gratefully onto my dumb, mute heart.

because when it comes time to remember this girl it will not be all perfectly articulated platitudes or carefully constructed diagnoses. when it is time to remember her after she leaves it will be my heart – lazy, slow, decidedly not smart – that will pull and yearn and twist around like a dog in the dirt. it will be my heart that will force my mind to remember her face, the way it felt to be with her, the way she looked sitting on the sofa, telling me that Mind, to her, is everything. my heart will have registered the deeper meaning snakeing and elusive beneath her desperate pieces; my heart alone will allow me to remember her whole.

right or wrong

i dont always make choices the standard way, the way people nowdays call healthy. i dont, at every crossroads, weigh the options, measure the odds, check my schemata to see how x or y fits. i stand at the fork waiting to be pulled by a force stronger than psychology, more precise than logic.
i make a hundred choices everyday, decisions about where to put my money, who to talk to, what food to eat. and yet the fundamental experiences which have shaped my life, the cities i’ve lived in, the family i’ve been born into, the people i’ve been attracted to, the color of my skin, the books i’m drawn to read, the ideas which compel me, none of these i choose. i find my map without a traditional trajectory, too fragmented for a linear narrative. there is always a direction. there is never a dead end, never a path that does not make me more a human being than i was before. i am always moving. i am always in life, walking.

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