What They Know: Neurodiverse Siblings

My boys, looking out at the Smokey Mountains, at the Appalachian Trail, Summer 2013

I can’t read their minds about how they feel about each other. I see their expressions or hear the yelling, watch the retreat into quietness or the surrender after a dispute, but I can’t tell what each is thinking or feeling. I have clues, but what can I really know? They are my sons, but I can’t guess what’s happening under the surface.

One is autistic, and one is something else.

One is loud, talkative, and dependent upon the stability of people around him. He can misunderstand what people say, can read bad intention into innocent mistakes, and can react passionately from hot to cold to hot in one afternoon. The connections he makes can be instant but he’ll remember them forever. Being highly perceptive, however, if he senses a lack of heart, he won’t give his. He loves people and he talks about growing up to be rich enough to help the homeless and the elderly. He always sees them, doesn’t overlook them. He is sensitive to his environment and needs things to be just so. He notices tiny changes in things he sees, smells, tastes and touches. He is creative, dynamic, hilarious, and irreverent. He’ll make you laugh and just when you think that’s it, he surprises you with the funniest out of the box thing. He’s an avid youtube watcher. When he finds a book he likes (rare) (usually graphic novels), he’s all in. When he finds something he likes, he loves it. If he doesn’t like something… he can’t stand it. He loves to have fun, spending time with his friends, and any kind of celebration. Although it gets complicated because of his anxiety and being autistic (high functioning in some ways, low functioning in others), he loves life. Ideally, sans anxiety & sensory issues, his happy place is being where the action with the people he loves, making them laugh and eating good food.

The other is quiet, internal, and independent, always expecting more of himself. He hates to be misunderstood, he brings stability to his friendship groups, and he has high expectations of being treated as kindly he treats others. Absent that kindness, he doesn’t react. He goes silent. He doesn’t swing his moods around. He doesn’t want to be demonstrative except in his safest places. He knows what he wants, and he wants things on his terms. He likes being himself more than following the crowd. His connections with people take a long time to foster. Once made, though, he’s loyal and it takes a lot to lose his heart. He is sensitive in his way, both to how he feels and how others feel. The combination is so intense that, unless prompted, he can overlook context and environments because of all the things he senses in people, missing the forest for the trees. He loves deep thinking, and he loves to laugh, using irony and plays on words. And sports, he likes sports. If he reads this, he won’t like it. He’s way too cool for this. He’d much rather cruise around undetected.

So how do they get along? I only know what I see and what they tell me. I’ve pretty much said they get along rather well as far as siblings go. I’ve felt pretty lucky, even more lucky in this sense than some of my friends with two neuro-typical kids. My boys don’t argue (with each other) much. I haven’t seen hate. They’ve seemed simpatico. But what do I know? One lashes out at the other, the other one barely snaps back. One is busy playing online games with his friends and the other wants to do things together, but for one reason or other it doesn’t happen. I don’t think much of it. One says harsh things, not unlike a preschool kid being vindictive after losing a game. I don’t take it seriously, and I figure the other kid blows it off, too.

But I know more now. I know that the older brother feels the need to hold himself back, to edit himself, to be the stable one. He takes his brother’s words to heart, and doesn’t filter them through the lens of his brother’s disability. He doesn’t have the remove of a parent. I mean, I’ve been there. I’ve heard the harshest things for years from a little boy who is feeling more than his vocabulary can express, who chooses the worst words he can think of just to say how bad he feels. When he directs his pain at me, I’m one step removed most of the time (not all the time.) I know that something else is going on under the surface, and that he’s hurting or angry and that it will pass. I know he really loves me. My own worst pain from all this is when I think his pain will make him want to hurt himself, a threat he’s made many times. It’s scary. But I’m an adult, and I see this little kid, I see him as the baby I carried, as the kid who held my hand. My oldest son, though, he sees his almost peer. He takes his brother’s words at face value. Only as he grows up is he starting to understand enough to have his own remove. He’s learning. But he hurts differently.

The three of us had the best talk today. Which makes me feel like an amazing parent, but actually it wouldn’t have happened without my oldest son starting to learn how to speak up. He wants to be close with his younger brother, and this talk wouldn’t have happened without him feeling how important his brother is to him. He talked about what he’s been going through, his perspective as his brother interacts with him. There was a lot of squirrely-ness from the youngest, but we made our way through it. In his way, the younger one tried to make the commitment to caring about his brother’s feelings, but he said it even as he distracted himself with games, so it wasn’t really believable. I believed him, but he needed to communicate it to the one that mattered, his big brother. Second try. Third try. He finally gave it the right attention, and it came from his heart, in his way. Still, it was hard for my older son to accept it for what it was. The youngest was speaking through echolalia, repeating the types of things that are said to him to cheer him up by his therapists and behaviorists. “You are the best, I wouldn’t be who I am without you, if it wasn’t for you I wouldn’t have accomplished anything good in my life.” I know these broad statements spoke more to the expansive regret my youngest had over not having cared about his brother’s feelings, relentlessly teasing him for years, with his brother having to be the bigger person even when he didn’t know how. It was hard for him to hear his brother as being genuine, but with a little bit of an aside explanation, and because he had researched the autism spectrum for a paper he wrote (he chose the subject matter), he remembered about echolalia. Things fell into place. My sons had a genuine exchange. One made a commitment to care about the other’s feelings, and the other made a commitment to be honest about when he feels hurt, with an expectation for his brother to respond with care and not harshness.

I know it won’t be perfect. I know we’ll have to revisit those commitments again and again. I know they want to be close. It’s so much of what I’ve wanted for them together, to be close as brothers.

So I learned that things were not as they’d seemed to me. I couldn’t roll up in a ball of sadness and guilt. I know I hadn’t insisted on the one to hide his feelings and take so much on, quite the contrary. I think I made an effort to hold the younger one responsible for how he treats others even though he has a disability. I thought I was advocating for them equally. But even though I strive to be sensitive to both of their needs, I still missed the distance that was growing in one son’s heart towards the other, or the particulars of his experience because he goes through this as a peer, not a parent. All I can do is see things for what they are, accept the truth as it presents itself, and learn.

Their friendship is a work in progress. They know it and I know it. But even in this imperfection, even knowing we’ll never get it just so, it’s still pretty perfect. We have a whole lot of imperfection and pain that only other neuro-diverse families understand. I hope this post helps map out some sort of path to wholeness in other families that feel they are drifting apart.

xoxo

~m

SaveSave

SaveSave

SaveSave

SaveSave

SaveSave

And so it is Autism.

This is from our day at the Whitney in NYC in August, in the elevator that looks like a basket, (so you ride in a basket up & down the museum floors) by Richard Artschwager. My kiddo loved it.

This is from our day at the Whitney in NYC in August, in the elevator that looks like a basket, (so you ride in a basket up & down the museum floors) by Richard Artschwager. My kiddo loved it.

 

 

 

 

And so it is Autism.

After years of appointments and therapies and treatments, here we are. He’s nine and a half years old. How did I not know sooner? I have plenty of familiarity with Autism Spectrum Disorder. Some of my friends have kids that have autism. I thought I knew what it looked like. I really thought I knew.

But I didn’t.

I’ve only known that we didn’t know what to do for our son anymore. We’ve sought all sorts of help since he was age two. And we still felt all sorts of stuck. We kept seeking more support. We tried one behavioral intervention after another. We changed our way of life and our expectations. We simplified our life in as many ways as we could. We stocked our toolkit to the brim with tips and tricks to help our unique son navigate life. But we still faced the adversary that didn’t seem to have the right name. We were told it was severe anxiety. We were told it was ADHD. But the things that helped kids that had those adversaries weren’t helping our son. In fact, he just seemed to get more frustrated. And it wasn’t for lack of trying.

Then in late November, after one week of refusing to attend school (an ongoing battle, but the first time 5 days in a row that smacked us down), we went to our scheduled appointment with his child psychiatrist. She’s impressed us with her expertise ever since we met her over a year ago. We discussed all we’d done for our son. We still seemed to be at square one for school anxieties. Then I described some of our activities during the week since he’d been home from school. And it was one little odd story, one that didn’t stand out to me as a red flag for autism but just said to me “hmm, that’s interesting about my kid, he sure likes to dig his hands into paint and smear it around in circles with no pictures in mind, isn’t that more typical of younger kids” and that’s what finally did it. A picture actually did start to crystalize. She asked, has anyone ever talked to you about ASD (Autism Spectrum Disorder)?

I was stunned. What!?!? No… not in regards to our son.

You see, I was really afraid when my sons were babies. For some reason, I felt sure I’d have a kid with autism (I’m remembering that as I write this), but it was probably more like a fear of it than a foreshadowing of the future. Then my older son reached all those milestones, and then so did my younger son. Eye contact. Pointing and indicating things with interest. Talking to and making friends. Loving make believe. I felt I’d dodged a bullet. Having autism seemed like the scariest thing. Really. But once we seemed in the clear, I didn’t think about it for my family again, even after little by little, after age 3 and 4, his strengths and qualities slowly changed. See, I was super aware that if there was a sudden change, that I should be alarmed. But instead, like when a lobster is put into warm water and it slowly reaches a boil, I didn’t see the signs, and I didn’t shout for that kind of help. Even if we’d asked for ASD evaluation early on, I’m not sure he would have been diagnosed. His increasing struggles seemed to happen over such a long period of time. We didn’t have a name for the subtle changes that happened over the years. I felt the heat rising. Our whole family did. Our stress has been at a boiling point. But we didn’t know why.

So we got the referral for autism spectrum disorder evaluation, and yesterday we left our house around seven-thirty in the morning and we got to our appointment in San Francisco by nine (thanks to Waze we were early!). Our appointment lasted until two-thirty. They weren’t slow, it’s just that my son had that hard of a time. The doctors were so very thorough. Even though I’d already sent in a huge pack of papers from old evaluations, from school testing results to report cards and teacher evals, they still went through our life with a fine toothed comb. They also spent time with our son doing cognitive games (um, he passed with such flying colors, my son was even making up tricks to make the game more interesting to himself; they had no need to finish the games), and doing a social evaluation thing that has a name like ADOS or something. My husband and I ended up being in the room because our son was too anxious without us there. Normally parents don’t get to watch. But now that we were in this ASD center and looking at my son in the ASD light… I could see it. I mean, I had a strong feeling going into the appt that ASD was the right track. I hoped to God they’d see it too, if that’s what he had. But seeing it in action at an evaluation appointment like this is a whole other thing entirely. It was so clear. I saw the way my son didn’t respond to social connections, the way he often used long quotes from television or YouTube shows to express himself, the way he demanded literal answers. And when us parents were interviewed separately from him, all the questions of “did he ever _____” regarding a milestone, then saying “yes, well, i guess he used to do that… I guess he stopped at some point” and realizing I was replying that way over and over again.

OMG. How did I not notice?

But we’re okay. We’re okay now, and we’ll keep being okay. I have so much to learn about the world as my son sees it. I want to help him join his world to our world. I want to help him make sense of it all. I want to appreciate his point of view. To know that the way I see it, the way most or many of us see the world, that it doesn’t make sense to him, but what he sees, that’s a thing too, it’s an important thing. I want to understand him better. And trust his actual intentions instead of only seeing the resistance and frustration. I’m looking forward to learning these things. That’s all for now. My son just finished his in-home school session with the teacher that comes out to our house. I’ll write more later. This is only the beginning for us.

Deadlines and Horizon Lines

External (or even internal!) art deadlines don’t always match what I need or serve my work. I thought I had come to terms with setting my own pace as an artist. I guess not. Well, life’s pace is setting me now, that’s the part I haven’t liked. I didn’t participate in deadline related projects for my work this past year, not outside shows, no applications to speak of. All the deadlines were internal ones I had set for myself, focusing more on studio work than anything else. But it turned out I couldn’t even keep those up. So, what’s been harder to reconcile has been my own expectations as an artist, my own desire to work without constant roadblocks put in my way. I wanted to meet the deadlines I set for myself. I wanted to mark progress (defined as making imagery that gets ever closer to that thing I’m trying to say) in my work, but I couldn’t even meet the minimal goals I had thought were realistic.

But wait a second, Self. How about listing out what I DID do in what I called my first semester of my Studio MFA? I think it would be helpful to remember that I DID do something. I actually did a lot.

  • Subjects: I chose 3 subjects (added a couple along the way), read up on them, and even wrote about what I read. I did more reading/writing back when I was still recovering from my bike accident, but since I’ve been back at regular life, I’ve still spent a little time reading at least.
  • Crit Group: I got one together, and we met to talk through our recent work and projects.
  • Mentor/Advisor/Tutor person: I met twice with an artist I admire for lots of reasons, who has experience teaching in the graduate MFA program at SFAI, who spent time with me & my work and gave me the kind of feedback I crave. She pointed me to things to read, think about, consider, explore. She agreed to meet with me in this role for me as I chip away at this MFA experience. Thrilling!
  • Events: I had all sorts of events plugged into my calendar. Show openings, free lectures at art programs all over my awesome Bay Area art community, things like that. All I got to do was ONE show opening, but it was a good one ( Mills College Art Museum: Public Works: Artists’ Interventions 1970s–Now) & I made it count.  I also did a studio visit with a friend whose work resonates with me even though it’s pretty different than mine. He just had a solo show open this past Friday in Oakland. I hope to make it in to see the finished work. Erik Parra, Each Devil His Own, Transmission Gallery, 770 West Grand Ave, Oakland. Thru January 23rd.
  • In Studio/Art: did the best I could, worked a lot from a makeshift studio area I created in my bedroom. I had a 22” x 32” anodized aluminum plate fabricated (to be used heated to 180 degrees by electric griddles) so I could work with wax + pigment on paper. I worked whenever I could.
  • I’ve written six blog posts (including this one) since September, and that’s something that took some effort. Even though I have no idea how many people read this–it could even be just a # I can count on one hand! ha!–but writing this & getting it out into the world is something that keeps me going. Writing my story as it happens, noting how it moves along, it keeps me aware.
  • ALSO, I’m the Editor-in-Chief for the art blog ProWax Journal and we published our 11th issue in November.

So yeah, Self… it might not have been exactly what you wanted, but it wasn’t nothing. Don’t you forget it.

In the middle of the Fall, life changed. Again. I kept hoping for more time in the studio, more uninterrupted focus on my artwork. But it didn’t happen. I had to let go of the big picture, at least for a little while. No deadlines, not even the private ones I make for myself. Just living for today. Like I said last week, I’m sitting down now. I’m breathing.

The home life things that are changing are a.) My youngest kid will be doing school at home for the next little while. Getting him to school had become impossible. We worked for over a year to get him to overcome school refusal due to anxiety. We added anxiety accommodations for the IEP he already had for speech issues. We did therapies and group classes. But we still seemed to be at square one. So now the school district is going to send a teacher to our house for a few hours each week for individual tutoring. We’re doing that till mid-January then reevaluating. b.) We’re being referred for Autism Spectrum Disorder evaluation. As I read up on high functioning autism, I was like OMG that’s it! I don’t know if that’s really it… we’ll find out after a lot of testing. But no matter where that determination lands, I know I’ve been dealing with a lot of the symptoms for years and years. My heart breaks for my kid the more I learn about what he’s been experiencing. But we’re making progress for him, and I’m seeing him happier than he’s been in a long time. The battles have lessened dramatically. He seems comfortable in his skin. I’m so happy that he’s happy; I’m even enjoying the process of having him home and with me all the time. We’re in this together.

I’ve realized there’s only one kind of line that is worth me holding onto as an artist, considering my life, considering my son, considering that I still want to make the artwork that only I can make. It’s The Horizon Line. It’s always there. I can trust that each day it will be available to me. I can’t reach it but I can always see it if I stand in the right spot. I’ll never arrive there to find that the journey is behind me. Because even if I was to reach that horizon, there would be a new horizon. I now trust that I’ll always have a hunger to see what’s over there, wondering what it looks like, and what it will be like to try and get there. I’ll always want to know what will happen when I make the next art thing. I know I’ll never stop being an explorer. I can’t help but hold on to hope, even if it’s a small hope, that I can always make art for the sheer joy of it. And that hope grows and leads me to know that I WILL keep making art. Today, it might not look like going to the studio. I don’t even know if I will go to the studio tomorrow or at all this week. But I’m finding joy in being an artist no matter what I do, in being an artist that is living life as it happens.

~mrk

“The horizon leans forward, offering you space to place new steps of change.” —Maya Angelou


On the Pulse of Morning
Inaugural Poem 1993
by Maya Angelou


A Rock, A River, A Tree
Hosts to species long since departed,
Marked the mastodon.
The dinosaur, who left dry tokens
Of their sojourn here
On our planet floor,
Any broad alarm of their hastening doom
Is lost in the gloom of dust and ages.


But today, the Rock cries out to us, clearly, forcefully,
Come, you may stand upon my
Back and face your distant destiny,
But seek no haven in my shadow.


I will give you no more hiding place down here.


You, created only a little lower than
The angels, have crouched too long in
The bruising darkness,
Have lain too long
Face down in ignorance.


Your mouths spilling words
Armed for slaughter.


The Rock cries out today, you may stand on me,
But do not hide your face.


Across the wall of the world,
A River sings a beautiful song,
Come rest here by my side.


Each of you a bordered country,
Delicate and strangely made proud,
Yet thrusting perpetually under siege.


Your armed struggles for profit
Have left collars of waste upon
My shore, currents of debris upon my breast.


Yet, today I call you to my riverside,
If you will study war no more. Come,


Clad in peace and I will sing the songs
The Creator gave to me when I and the
Tree and the stone were one.


Before cynicism was a bloody sear across your
Brow and when you yet knew you still
Knew nothing.


The River sings and sings on.


There is a true yearning to respond to
The singing River and the wise Rock.


So say the Asian, the Hispanic, the Jew
The African and Native American, the Sioux,
The Catholic, the Muslim, the French, the Greek
The Irish, the Rabbi, the Priest, the Sheikh,
The Gay, the Straight, the Preacher,
The privileged, the homeless, the Teacher.
They hear. They all hear
The speaking of the Tree.


Today, the first and last of every Tree
Speaks to humankind. Come to me, here beside the River.


Plant yourself beside me, here beside the River.


Each of you, descendant of some passed
On traveller, has been paid for.


You, who gave me my first name, you
Pawnee, Apache and Seneca, you
Cherokee Nation, who rested with me, then
Forced on bloody feet, left me to the employment of
Other seekers–desperate for gain,
Starving for gold.


You, the Turk, the Swede, the German, the Scot …
You the Ashanti, the Yoruba, the Kru, bought
Sold, stolen, arriving on a nightmare
Praying for a dream.


Here, root yourselves beside me.


I am the Tree planted by the River,
Which will not be moved.


I, the Rock, I the River, I the Tree
I am yours–your Passages have been paid.


Lift up your faces, you have a piercing need
For this bright morning dawning for you.


History, despite its wrenching pain,
Cannot be unlived, and if faced
With courage, need not be lived again.


Lift up your eyes upon
The day breaking for you.


Give birth again
To the dream.


Women, children, men,
Take it into the palms of your hands.


Mold it into the shape of your most
Private need. Sculpt it into
The image of your most public self.
Lift up your hearts
Each new hour holds new chances
For new beginnings.


Do not be wedded forever
To fear, yoked eternally
To brutishness.


The horizon leans forward,
Offering you space to place new steps of change.
Here, on the pulse of this fine day
You may have the courage
To look up and out upon me, the
Rock, the River, the Tree, your country.


No less to Midas than the mendicant.


No less to you now than the mastodon then.


Here on the pulse of this new day
You may have the grace to look up and out
And into your sister’s eyes, into
Your brother’s face, your country
And say simply
Very simply
With hope
Good morning.