What is Autism?

This post has sat with my for a long time. I live at the crux of two paradoxes. First, I unschool and believe all children are passionate learners and should learn however they want, and I trust that they will learn what they need to learn in life; however, I also feel that “labeling” autism is a helpful guide in understanding my child’s learning process and needs. Second, I don’t see the label as a bad thing at all. Instead, I am passionately learning more and more about neurodiversity and reading self-advocacy and advice from autistic adults; however, I also feel that autism can be (but is not always) the result of pollution or toxins in the environment of the child or mother.

So I don’t send my daughter to school, I let her take the lead and thrive in her own ways even as I research what it means to be autistic, what her experiences might be, what sensory tools and therapies might help her, what biological health tools might help her, and what measures we can take to reduce toxins in the environment and prevent the ever-increasing numbers of autistic kids.

Everything I’ve just said is incredibly controversial. Unschooling is controversial. Not using early intervention and ABA (applied behavior analysis) on a young autistic kid is controversial. That’s just to start. Then, I read the work of many unschooling parents who describe their children and I keep thinking “that kid is austistic!” But these parents passionately argue that without school you don’t need labels and can just let your kid be themselves. Finally, I read the work of many autistic self-advocates and neurodiversity writers who argue that focusing on causes and treating autism like a disease always means that you are telling autistic people there is something wrong with them.

So to take on these points: first, I believe in facilitating and offering enriching opportunities for play and self-directed education: I believe in unschooling. Next, I strongly agree with many autistic adults that ABA encourages compliance and conformity for the primary purpose of erasing outward signs of autism and making someone seem “normal” and “fit in.” And I agree that it’s damaging to a kids’ self-esteem, independence, and spirit. I used to be an ABA therapist, and I declined to continue because it was the most depressing work I have ever done, even when at the time I thought I was helping these kids. I am still exploring what therapy options may be positive and something we can get covered or afford. Furthermore, I believe that there isn’t anything wrong with my autistic kid, there is something wrong with the world that people cannot handle stimming, sensory sensitivity, intensive interests, and social difficulties. There are at least 1 in 68 kids with autism, and our culture needs to get over it’s fear and villification of difference and accept that someone may need to stim while they play or talk or work or learn but they are still every bit and sometimes more capable of living a fulfilling life as an allistic person.

Next: I think the label helps. Because a label is an organizing tool. It’s a research tool. It’s a community building tool. You can’t have the Autistic Women’s Network or the Autistic Self-Advocacy Network–and all the work they do to write, to learn, to teach, to advocate–without the “label” autistic. And I think it helps at the personal level both for the individual and the parent. I can’t read adults reflections on what it’s like to have sensory aversions and fear of food without the word “autistic,” or at least it would be a lot harder to find stories that I can apply to my daughter’s experience. I wouldn’t know that joint compression and rolling like a burrito and platform swings you can lay down on all help so much without the diagnosis of autism and the books and therapists that have worked for us so far. I have absolutely no regrets about diagnosis, it has helped. The only thing I regret is when I let a few of the therapists get to me angry with their arguments that it’s not sensory overwhelm, it’s defiant behavior and I just need to make her do things.

Finally, we live in a world where climate change and pollution are out of control. Setting aside the topic of what causes autism, some of the best investigative and journalistic work I’ve seen in the last few years have been about health, the environment, and environmental justice. Like this article about PFOA and Teflon. Or Sandra Steingraber’s work–motivated in part by surviving cancer–on arsenic in children’s playgrounds, PVC toxicity and manufacturing risks, and fracking. We are poisoning ourselves because profit matters more culturally and politically than long-term health. Environmental justice is a core issue in our current world. And autism, I believe, is part of this issue. The toxic tipping point of each pregnant mother and each infant may be genetically determined and individually variable, but there is a tipping point where certain toxins affect brain development. Most autism research points to this nexus of genetic susceptibility and environmental exposure. So that the more toxic exposure, the more children will have autism, for example when mothers live nearby farms with intensive pesticide use. Although it is terrifyingly controversial, there are many reasons to believe that a particular person’s tipping point, their body’s inability to process such environmental chemicals also triggers immune system overstimulation and can be reached because of their inability to process aluminum in vaccines. I believe this topic is worth researching and the causes of autism are urgent. There is an increase in autism not explained by genetics, increased diagnosis, or evolutionary neurodiversity, an increase that is more about what is happening in our enviornment.

I do, if not agree than at least support or align, with many neurodiversity writers that the causes of autism do not need to be a parent’s primary focus and sometimes get in the way of seeing the beauty and potential and strength and power of autistic people. Focusing on causes does predispose people to think of autism as something that’s wrong with someone, rather than a beautiful part of who they are. Which is why I think research and advocacy around causes should be more informed by the environmental justice movement. Autism parents need to learn to be allies to their kids and allies to the kids of Flint, Michigan and many small towns around the country who have lead poisoning, for example. All of these families should be united in strengthening the EPA and fighting for more regulations of and research on toxins in our environment. This is a vastly different personal and political stance than identifying a genetic cause of and cure for autism.

The true crux of my lived paradox is the individualism and privatization of unschooling in a way that enriches–rather than strains–my autistic child in contrast with my desire to be socially engaged and support collective solutions to our common problems. I do all the work of her education myself because there is no school–not even a democratic school–where you can wake up late and learn how to do logical circuits in Super Mario Maker in the same clothes you wore yesterday without brushing your hair for days on end. So I facilitate this learning by staying home and doing her education myself. And the world is not accepting of her or made for her, so I stay home to always be by her side, always facilitate her interaction with the many many people (almost every single person) who doesn’t understand her sensory or communication needs. But at the same time, I want more collectivity. More support for me in the endless work of raising and educating two kids. More support for public education and more support for parents fighting for their kid’s IEP. More regulation of pollution, more research on health. More research on how autistic adults can thrive as full people, not charity cases. Juggling so many paradoxes, it’s quite hard to find supportive community or imagine a collectivity forming around these ideas. But I keep trying.

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Strike: Thirsty for Long-Form

My work right now is kids. It’s not writing. I squeeze in this writing in the small bits of time I have between diaper changes, making food, comforting, reading, setting up art projects, vacuuming, sweeping, persuading, dressing, changing, washing, pushing, coaching, teaching, comforting.

When I heard about the strike today, I was torn about what to do. Clearly the most visible way to strike would be to have my husband take off work and make the point that his presence requires my labor. But I want to save all my husband’s vacation time for trips both to see family, even just a day to pack up camping gear. These breaks soothe my frayed nerves and make my continued labor possible by keeping me sane. And he’s already taking so many days for all my daughter’s doctors and therapy when I need to focus on her and need him to help with the baby. So we just squeezed in an extra two hours off work. He wore red today, his female boss wasn’t there, and he came home early.

So here you go. I can write now. While taking care of the kids, I can’t write. I read about other mother writers who take notes in the car, write before or after bed, but I cannot squeeze in another “in between kids” thing. My head echos with crying–crying for food, comfort, nursing, sleep, diaper changes, sensory-induced panic and meltdowns. That and my daughter’s endless discussion of Mario video games, I topic I have entirely avoided for 30 years and which I now must find creative ways to love. I can barely form the sentences I need to plan a play date, plan dinner, respond to information about Mario, ask how my husband’s day was. All of which is part of my work, by labor, which I would withhold if I could strike. I can barely, and can’t really, do that work at all because if I do form those sentences usually half way through someone will start crying or yelling. And if they don’t they’ll be doing something cute, and I’ll interrupt myself to point that out and take a picture. Another form of labor–documenting, filing, organizing, commenting, sharing these moments in our kids lives because it’s so easy and so hard at the same time. Because other people want this and you’ll want this in the future.

During the day I barely have the concentration it takes to wash a dish. If I attempt to put away the dishes baby will climb in the dishwasher. If I attempt to sweep he likes to swish his feet in the dirt piles and chew on the dust pan. During the  day I wince when I look around at all that needs to be done. My flinching is like the Pavlovian dog, with previous shocks teaching it not to try again. Do no try to put that towel away, walking out of the living room into the hallway will surely induce both kids to scream.

So this is my strike, to sit and write this all down. I am privileged to have fairly stable housing, food, healthcare, a fairly consistent income that just barely allows me to stay home. To have citizenship which means no one is trying to deport me. To be white which means my kids don’t get taken away when I try to homeschool. I am grateful for these privileges and I cannot imagine doing this with less. I try to be as active as I can–writing, calling representatives while bouncing the baby on one hip, signing and sharing petitions and articles, keeping up with the next horrifying piece of legislation or executive order that literally aims to kill the poor, Black Americans, and refugees. I try to do something for those parents who are doing all the childcare I describe here while also running away from war, from violence, from ICE. While also losing their housing, not being able to access health care, or being subject to domestic violence, or working two jobs just to be able to pay for housing and food.

I try to be there and be active for the people who are subject to so much political and capitalist violence, and my trying is limited to social media. I can’t write because creativity eludes me in the moments when other mothers write: when the baby has fallen asleep nursing. But my baby can never ever be set down without waking up. So I sit rocking and nursing for an undetermined about of time, which makes me too anxious to think about writing. Meanwhile I’ve just exhausted myself making sure my daughter has everything she needs before the baby falls asleep so I don’t have to get up to help her, which one way or another usually involves her screaming and wakes him up. I’ve just begged her to eat something healthy, to brush her teeth, to go to the bathroom, each of these simple functions a daily challenge (not to mention changing clothes, bathing, hair brushing and nails, which are simply not possible with only one parent around). I’ve tried to clean up so she’s comfortable where she sits, I’ve tried to spend some time talking with her about her thoughts on Mario games so that she doesn’t feel lonely and jealous watching me rock the baby endlessly. I do all this work sometimes from the moment I get up, in addition to typical baby work of dressing, feeding, cleaning, changing, reading, playing, carrying carrying carrying carrying.

Then he falls asleep, and I’m exhausted and feel disconnected from all other adults in the world. I also have no idea how long I will be able to sit and read or think. So I go on facebook, check email, sign petitions, read short articles. Because a long article, a book, or an attempt to write not only require more energy, but if I attempt these things and then one of the kids suddenly (so suddenly, with a scream) needs me, I get angry. I get mad at them, when they are doing nothing wrong. So I keep my expectations low and do all the things that people these days love to hate on–social media, petitions, brief headlining journalism. It’s fulfilling and soothing and somewhat empowering (I know social media very well by now), and a treadmill of constant crisis.

Of course, life under Trump is a constant crisis. And it requires vigilance and connection, both of which are possible via social media and via the communities that I have found online. Rather than an echo chamber of similarly-minded people, I have found myself and family and friends politicized and strengthened by our ability to share, comment, and discuss online. I believe this matters, and it’s an improvement on the isolation of my post-play-in-the-street and pre-social-media childhood. My friend the high school teacher found out about the strike on social media and will be teaching about it in class. My friend the Latin American Studies professor shared her teaching ideas and materials on social media. I’ve found inspiring art and interesting discussions of striking, working class history, race, and privilege. My homeschool group shared info about a protest, discussed and supported each other in attending, and shared pictures that make us all feel like we are there for one another, emotionally and politically. This work has value. And it is the work, right now, that I can fit in between childcare tasks.

But I am so strained by the constant shattering of my thoughts via both children crying and social media. Always something demands my attention. One of the kids needs me or the current headline, the current bill, the current leak, the current violence of ICE or another Black person shot, each of these demand my attention.

I am thirsty for long-form. The two kids sleeping habits in combination with my own, plus my goals and ambitions for weekend day trips, projects, cleaning, leave me nothing. Never one solid hour to write or read or simply think or walk on my own.

So my strike is to stop doing the work that fits in between, to have a man take on the childcare for a full hour or two, and to create what I want from the internet but so rarely find. Both in form–these long, somewhat rambling blog posts that I’m sure fit no one’s recommendation for the kind of blog that gets hits–and in topic: anti-racist, anti-childism, anti-ableism, socially and environmentally-aware discussion of the beauty and the rough side of parenting and homeschooling.

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Learning Values

There are three core values that I thought I’d impose as a parent, which I’ve found I have no interest in “imposing”–if that can be done successfully with values.

First, I imagined we’d be a screen-free family, or only watch Sesame Street. Ha.Sesame Street scares the crap out of my daughter. “Mario’s Nightmare” on youtube does not. My only explanation of this is that it has something to do with being overwhelmed by eye contact and emotional expression in more typical movies. In the meantime, I scare away wonderful, well-meaning parents when I say my four-year-old has mastered multiple Mario video games. I have posted about this before here and here.

Second, I imagined my kid would have a thorough and intensive social justice education before kindergarten. That I’d check out books by racially diverse authors that dealt with struggles like slavery, Jim Crow, the Trail of Tears, housing discrimination, and immigration as well as diverse religions, arts, histories, geography. Instead, I’ve realized I can’t force her to read things and neither she nor I have time to read things that some blog listed as the most educational book about diversity. I still try to get diverse books in, but they look more like Chris Raschka’s goofy series of jokes, Moosey Moose and Crabby Crab. This then brings us to his Yo, Yes and The Hello Goodbye Window, both of which use subtle social interactions tinged with grace to discuss with Black/white American relations. Yo, Yes for example deals with shyness, which is how my daughter understands her difficulty with social interaction. It promotes interracial friendship but not in the facebook meme, stunted reading of “I Have a Dream” kind of way where two cute babies with different skin tones hold hands. Instead, it so gracefully grapples with the difficulty of interracial friendship via differences in language (Yo and Yes), demeanor, and style. All of which contribute to miscommunications but can be overcome and can enrich the friendship. The book is so rich because my daughter identifies with shyness and understands a bit about whiteness, but when she’s happy and confident her style of communication resembles so much the brash “Yo!” that starts the book, the sudden and simple way boys make friends:

 

I also thought that we would protest together for women’s rights, for Black Lives Matter, for Native land rights, to end war. I brought her as a baby but even as a baby she’d be overwhelmed by the people. Then it got too hard, and by the time she was three I realized I needed to respect her sensory needs, that a protest was too much. But lately that’s begun to shift again. I don’t lecture her about politics, but I did tell her I was sad about Alton Sterling and Philando Castile, that they were hurt by police because the police thought they were scary because of their skin color. I told her I was sad about war in Syria and we watched a video of kids painting a bus in Aleppo. And since my husband and I fought and cried after the US election, and I could barely function for days, I found obvious need to tell her about the “mean” president who doesn’t like people because they are different than him. And how people think women can’t be president even though women can do all the things men can do.

In the week after the election, we were walking through our neighborhood and saw a peace flag with a hand-written note on it, saying “My name is ___ ___ and I did not vote for Trump.” For whatever reason this warmed my heart. To begin to speak and protest, to say no publicly and begin to say no together. And since I stopped and gazed at the sign, I told my daughter why, that the sign was a kind of protest against the mean president. And since then she has wanted to protest. We even made it, baby and all, to the electoral college protest. Amazingly, she was motivated and not afraid, enough that she was able to march herself for a few minutes and sit for a few minutes among all the people. Those ten minutes of involvement mean so much to me, and to her, much more than the hours I would have put in had I taken her to protests where she was overwhelmed and wanted to hide.

Finally, I thought we would be healthy. My husband and I eat a ridiculously healthy diet with loads of vegetables. My daughter eats bread and cheese and a few vegetable fragments. Yet while I’m trying to use whatever playful, therapeutic resources  I have to help her feel comfortable with new foods, I also know that I don’t want to make food a point of stress or guilt or dejection.

My husband and I also hike and want to be out in nature as much as possible. This has been a surprising roller coaster as parents. Camping and being in nature are in many ways the best thing we can do for our daughter. The world becomes her playground, social rules don’t apply in the same way. The ground is not a blank surface to be cleaned but a treasure trove of materials (sticks, dirt) for her imagination. There are no walls, and in some ways she needs to create a safe nook (the picnic table and tent provide security and stability) but in other ways this is comforting. Still, our romantic tradition of hiking every other weekend has radically changed since she got too big to carry all the way. I thought I would be like a friend of mine and just keep hiking, forcing the kid to tag along. I thought I would insist on physical effort in exchange for treats and vistas and the value of nature. Instead, we’ve found that we have no desire to force her to hike, and the result is that it’s rare if we go a mile out. We can still pick her up but not for long.

20170108_151947For the past couple years not forcing her to hike has meant very little hiking. The constant change in environment makes her shut down rather than be motivated to continue. Until now, because now there is Mario. Suddenly she is hiking and it’s because of screen time. When we start walking anywhere–around the neighborhood or in a forest–she wants to play Mario (identified by a specific game, because the titles “New Super Mario Bros. U” or “Super Mario 3D World” are hugely important). Once we have our assigned roles–Bowser, Mario, Princess Peach, Baby Luigi–she runs down the trail or sidewalk for miles. Because we’re throwing electricity at her, because she’s got a one-up, because the whole world becomes her playground.

If last year was about embracing her autism and not imposing expectations, this year is about learning what she is capable of, beyond and completely separate from the things I imagined before I had kids. I had boxes to check off before I had kids–literacy education, social justice, health–and I thought I knew what that would look like: PBS, protests, hiking, and nature education. Now, I still have the same values but I respect that her learning–rather than me teaching–those values means they are put through the kaleidoscope that is her self: her autism, her desire to be “girly” combined with her so often brash demeanor, her coming of age in this political climate, her digital world where she watches us on our smartphones and knows that messages from grandma come via screens. There is no way I could have predicted or anticipated or imposed what the values in her world should be. Instead, she’s teaching me, and she’s challenging herself not because I check out the right books from the library and force them on her. Not because I drag her out for a 5 mile hike at 7am. Not because I turn off the screen and make her go outside. But because the world is fun and challenging. Because she enjoys a battle between Mario characters and the different shapes of an oak leaf. Because she wants to read goofy books and is upset that war and racism hurt people. Because she loves signs of all kinds, about water drains or traffic or politics. Because she loves to draw in the dirt and have her tablet charged for the whole camping trip.

I sometimes wince at reconnecting with old friends who’ve had babies. I’m pretty sure that when I was a new parent, if I’d met someone like me now I would have thought they were nuts. Video games, a diet of cheese sandwiches, so much less diversity education than I imagined and wanted, autism: these are things I was afraid of. These are now things that have shattered my white upper middle class snobbery and made my life beautiful.

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Looking Up

Yesterday I realized that my daughter had been her autistic self long before we even considered asking about diagnosis. At least since 10 months. I took her and my baby to a “play cafe”–one of those places with the coolest toys and a high door price. She loves this place, it offers so many opportunities for crafting projects; setting up long stories with complete, organized sets of animals and plushies; exploring loft spaces and tunnel spaces. She even loves playing with other kids there. She can handle 30 minutes of conversation with multiple!!!! kids when everyone is gathered around the play dough table, looking down at their sculptures instead of each other and clearly talking about the same things.

So I think of this as a place where she thrives, where she is social but can also choose to have long periods to focus on the intense narratives in her own head. And she did thrive. She acted out plays, made art, did play dough and clay, arranged her plushies, even showed off a few gymnastic tricks when that’s what everyone else was doing. But she did burn out on the noisy dance/gym space with music and four other kids trying to talk over each other. She did need to retreat to a (luckily) empty room. She did snap at another girl who moved her plushies a bit too much. And afterward, it had all been so intense that we had one of those hours when every touch, everything I say, makes her scream. I was late on the occupational therapy tricks (brushing, squeezing, etc) to get her out of that state. Which means she refuses when I offer these therapies because she’s already overloaded and the verbal input of me offering is too much. And when everything I say makes her scream, I get so burnt out. Not angry, not sad, but frazzled, brittle. So that another scream will just break my spirit.

She thrived at this place, she got to learn and explore, but it takes a lot out of me. That’s the autism–I have to set things up exactly right, and if I don’t set things up right or if something crucial goes wrong (the wrong color toy, a drawing accidentally ripped) I have to know how to intervene, I have to strategize about sensory overload. And if I don’t do that then she’s screaming, flopping, hitting, refusing all interaction. This is my everyday. Every single day, there’s this pressure to help her succeed in being in the world–not even going out of the house, but just taking care of physical and sensory needs so that other needs–ideas, play, education–can happen. I know she’s only four, of course she’ll learn to help herself more, but now it’s all on me and when I fail her screams hurt.

And it’s lonely–most people can’t tell I’m doing this. If I talk about what I’m doing they see a high functioning kid or maybe a tired kid or a tantruming kid and think that I’m exaggerating, complaining, medicalizing.

 

20161231_142849I took this picture, one of hundreds where I’ve been standing for a while watching her make something or tell a story and her creativity and focus are so beautiful. One of her doctors called it talking to herself but that’s not it exactly. It’s creative, she is imagining something amazing, something new. These pictures are always looking down and it takes a lot of work to get the one where I can even see her face. These pictures are beautiful and they are different than the pictures most parents take. She is, the pictures are, beautifully autistic, beautifully herself. I know these moments are where her creativity blossoms. Where she comes up with ideas for new video games, stories about all the characters she loves, art, drawings, ideas about nature. This is her thriving.

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Then I turned around and took this picture of the baby. Maybe it doesn’t look that different to you but the eyes are open a little more. Because as I moved closer to take the picture, he looked up at me. He looked up at me. And I almost started crying from shock. She never looks up in these moments. I understand that this is because breaking her concentration would cause a crisis for her: it would make her forget the whole story she was telling because the sensory input of looking at me takes over her thoughts. I understand that this concentration of hers, her not looking up, leads her to be able to do amazing things. But it never occurred to me until this moment that most kids would look up when you move closer to take a picture. She never looks up.

Not only that, but the baby never needed me in this noisy, new, high input environment. Of course he needed me for baby things–nursing, a few bumps and bruises, to stop him from climbing the stairs–but he didn’t need me as a solid, steady, quick, therapeutic, guide in a scary place. He just needed a little food and attention, and otherwise he toddled around smiling at all the crazy kids and trying to participate. Grabbing things, throwing things, happy-go-lucky and easy. Hard because he’s far more likely than she ever was to knock over furniture or stick his finger in an outlet. But emotionally easy. No relentless yelling, no meltdown. Maybe a brief tantrum when I forced him to stop eating play dough. But so easy for me emotionally. And this is what made me certain that her autism has been there since nearly the beginning. Even at 10 months, she would have had to hide from all the people. She would have avoided the kids, she would have hid on me, she wouldn’t have looked up for a picture.

When I finally got home after this outing I wanted to cry. I love my girl, I love my baby, I love them both equally but differently. I love her like I’ve been struck by lightning–sharp, out of control, taking over my whole self. I love my baby like we’re on a boat together, working together, enjoying the journey. But I didn’t know the “parenting” I was missing with her until I had him. I had no idea that this is what it’s like for other people–you go to a social space, a kid space, and you don’t need to make 101 accommodations to make it work. You don’t need to facilitate every social interaction, always on the edge of a meltdown that will feel to the other kid like bullying, that will make you and your kid unwelcome in that space. You just go, you sit, you laugh. You tut tut at a couple tantrums, you keep them safe. This is what people were always telling me to do, and how can I explain that it doesn’t work that way with her? I can’t just tut tut when she’s having a meltdown, I can’t sit back while she plays with other kids. I know parenting is always hard, but parenting my seemingly neurotypical baby felt so, so easy on this day. It’s a whole different world of parenting, and I wanted to cry, not from regret or bitterness, but because suddenly this world is unveiled to me and I never really knew it was there. Always there, right on the other side of the room in baby gym, sitting by my side in library story time, across the table at art class. A world nowhere near as intense, not so on edge as the only parenting world I ever knew before.

So now that the baby is a toddler, now that he is scooping his own play dough and walking, now I move in both worlds. The neurotypical and the autism parenting worlds. I carry them both on either side of me, and depending on who I interact with–the parent of a neurotypical kid or the parent of a kid with autism–I will have a whole different conversation. There’s the one where kids play and connect so easily, where they are more creative together and need friends around, where surprises are delightful. There’s the other where every path, every interaction, needs to be mapped out, needs to be a certain color, a certain scripted phrase, and if everything goes right it releases this brilliant, unique creativity. Because even though the autism world is so hard, it is also so powerful, so capable of magic, of the unexpected.

How do I explain these worlds, this difference, without ranking them? It’s lonelier to be a parent on the autistic side. The parents sitting next to you feel far away, their words don’t make sense–at least not until you have a neurotypical kid. But parenting an autistic kid means not only a whole world of struggle, but also a whole world of beauty you couldn’t otherwise imagine. It’s much harder, but it’s also stunning.

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And we’re back (Plus Hands Are Not for Hitting, by Martin Agassi and Marieka Heinlen)

I think I can forgive myself for not writing for 4 months. Those last couple posts, in the midst of having a tiny baby and an autistic kid, remind me that it has gotten easier now. Even as I long for the next year when it will, I think, get easier. Even as I adore my baby’s tiny chubby baby arms and wildly infectious smile, a smile that comes so simply, with just eye contact, just a silly  noise.

I still have many days where I feel like I’m the dry grass prairie and my children are the fire, ripping through everything I have. But I have fully embraced the double stroller, the fact that my daughter only watches movies about video games, and we can enjoy it now more and more. Plus, the baby will sit in the double stroller with her sometimes and giggle at his sister. Plus, they play together. The magic.

The other day, my daughter used the word “Anyway” as a transition in the story she was telling me. She used it appropriately: she digressed a bit and then came back to her main point with “anyway.” It still felt a bit scripted, I could hear the youtube gamers in her voice, but that’s okay. We both enjoy the scripting, and she enfolds these words and phrases with her own in ways that empower her. The language becomes her own, but also remains scripted in a joyful way. She laughs at the phrases and laughs at using them in surprising contexts. I can use them to help her understand something new. Scripting helps make the world more accessible.

We’ve moved (also a very good reason to forgive myself for not writing) and I’ve connected with several homeschooling families, most of whom limit screen time. It makes it difficult to have a conversation. Things like staying up late, picky eating, not being able to hear me talking–when I try to talk openly about my daughter’s challenges with other parents who limit screen time, they blame the screen. But her “anyway” brought me back. It reminded me how unschooling has opened up worlds for us. No limits on screens means she has developed her own passion (or “special interest” in the autism world), that she follows it almost without limits (except needing to sleep and get outside sometimes), that we CARE about it too and we, as parents, SHARE her exploration.

I can’t tell you how frustrating it is to be with grandparents or anyone else who wants to interact with my daughter but wants to be a “good influence” by pushing her away from screens. The number one thing she wants to share with anyone, to connect and build her relationship, is video games. So when they push her away and push her away–suggest something else and distract–I see almost visibly the emotional split between that person and my daughter. Grandma’s won’t understand the games she plays at the park if they don’t know anything about her favorite video game, because when she’s at the top of the playground she’s Bowser, when she’s racing she’s Rosalina and you are Princess Peach. When people push her away from her games, they communicate that they are not interested in her, and she becomes less interested in them. Instead, when my husband and I have time to play with her, watch with her, and facilitate her exploration, whole worlds of language and learning open up.

Our biggest learning process lately has been emotional frustration, which is huge with autism! And we are working on it every day. Mainly because I don’t like video games almost at all, and I don’t play them well. But she wants me to play with her, and then she gets frustrated with me.

With the baby and the move, she’s been hitting too much. And from the outside it might look like the games are causing the hitting, but I think the games are a safe space to have these emotions. They are also a safe space to work through them. At the library, she wanted to check out the Hands are Not for Hitting Book. I was going to put it back because she doesn’t like social stories and lectures, but she requested it and requests to read it. She knows we’re working on this. Like another autism mom suggested to me, rather than a lecture about what “not” to do that book gives you ideas of something else to do with your hands. Something simple, concrete, and accessible when frustration has your senses and physical control and words in a scramble.

We’ve also been drawing amazing drawings about how we feel. For weeks she would yell at me for making mistakes in her video game, and I would try to explain that I was trying my best. My words had no effect, and I was getting similarly frustrated. Then we somehow came up with drawing how we feel.

The visuals help her understand instantly. It doesn’t cure her frustration, but it’s calming, she loves it, and it helps. We go back and keep the drawings with us as we play, inspiring us to cooperate a little more smoothly every day.

 

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Brush fire

I am on fire

But not the empowering kind

Not the athletic kind

Not the sprinter burning toward a finish line, hands ready to hold up the sky in victory.

The kind where you stand outside a house beyond saving and watch it burn, just starting to feel the loss.

I am on fire, but I am not fire.

I am yellow earth, grass.

The shape of each flame is a blade of grass disappearing, a word I can’t hold in my mind long enough to make a sentence.

The shape of each flame never holds long enough to become poem.

I need stories, narrative, but only feel anger, pain, loss when I try to access them and am interrupted again and again.

These two young children can be my only story now, the only story I lose myself in, the only story I tell.

I am on fire. My daughter is the fire, loss and victory. My son is the sun, bright but burning.

My husband keeps planting seeds hoping we’ll get to the other side.

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Embracing

I woke up this morning with a post on my mind, a list of all the things I must embrace because my daughter is autistic.

I embrace the fact that she’s afraid of movies and I won’t be able to watch a movie with her for a very long time if ever. Instead, I embrace watching hours of video game recordings with her and finding her joy in the comforting, steady trajectory of the main character, the steady backgrounds, the small thrills of getting coins and leaping over man eating plants.

I embrace the fact that she won’t walk between the car and the library door anymore, let alone holding my hand on a long walk. I embrace the fact that we need a double stroller and will need one possibly until the baby decides to walk.

I embrace the fact that she doesn’t know when she’s gone poo or pee, or whether or not she has on a diaper. I embrace the fact that we’re not ready for potty training and won’t be for a long time.

I embrace the fact that I am more aware and more knowledgeable of the signs of autism, and that I will be looking for them in the baby every day. I embrace the fact that there are a couple but they don’t necessarily mean anything, that I can’t know and he may or may not be so different than his sister.

I was going to add to this list and end it with the beautiful things I embrace–her precision, her drawing, her explosive and sweet and constant love for her brother who is safe to her and therefore the recipient of all the love she’s too scared to give the world.

But then the baby woke up before I had a chance to even get my old computer to turn on, stop processing updates, and open a web browser. Because I also embrace the fact that we’re broke because I stay home. And I embrace the fact that this baby cannot sleep for more than 10 minutes by himself even when I wake up at 5:30am. And when I knew he would wake up for sure, I wanted to punch a wall, furious about my lack of any time alone, any time not “on the clock” in the sense of ready for the next scream, ready for the next diaper, ready for the next nap which requires both hands and my whole body embracing and bouncing the baby.

I feel like I’m in a psychological experiment where every time I get an idea or a goal, I am interrupted by screams and cries and physical demands. Saying I embrace that fact is just bullshit. Which makes the whole original post bullshit.

I realized quickly that I wasn’t writing this post for myself, or for other mom’s of kids on the spectrum. I was writing this post because I’m about to see an incredibly overbearing family member who doesn’t believe my daughter is on the spectrum and doesn’t like anything we’re doing (staying home, homeschooling, or anything else). That family member will let me know about her disapproval in passive aggressive comments, little critiques and dismissals, little “I just said. . .” that can’t be pinned down. So of course I’ve been having pretend conversations in my head where I argue with her, and this post was one of them. Yet another attempt to prove that my daughter is on the spectrum in order to prove that my struggles are real.

Because I find it incredibly hard to embrace the fact that my experience and choices as a parent, along with my commitment to social justice (because we’re also likely to argue about white privilege and political action for racial justice), make a majority of my family members lose respect for me. And yet I love them anyway, and continue to see them, even when it makes me angry and anxious.

I wish I could be flagrantly counterculture. Part of what attracted me to my husband was the way he didn’t care–dyed his hair, became a goth, listened to ear piercing experimental music, no matter what anyone said. And here I am using all my mental energy trying to prove to someone who will never accept me the truths of my life as I see them. I don’t know how to live on the chasm that opens when I think about letting go of the effort to make my family understand, to make them support our choices and respect our experience and love my children and myself and my husband just the way we are.

I do know that physically and emotionally embracing my children is the right thing. That even if I’m mad at being interrupted as soon as I pick my baby up he is the sunshine in my life. That even if my daughter is too scared to walk herself, holding her against me, arms around my neck and cheek against mine is the right thing. That no matter how much tough love my family prescribes I know I’m doing right by just picking her up and not trying to terrify her into acting normal. I know that I love how much love I get to give my children everyday by staying home, no matter what anyone else thinks.

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