Speaking Atticus

Speaking Atticus
Atticus does not speak fluently. Over the years we’ve been given every possible explanation for this. He’s mentally retarded, he has autism, he’ll grow into it, it’s just a CP thing. Almost always, like, so close to always that the distinction is negligible, the assumption has been that his speech is a result of his intellectual abilities. He’s had school psychologists tell us, with him on my lap, that we should be happy if he could make change one day. He’s had teachers who refused to teach him. He’s had family members talk about him like he’s not in the room or ask if he likes to watch the Simpsons because he likes the colors and not the biting social satire.

If he didn’t speak at all he would have been given a communication device by now. But he speaks enough that it often gets misinterpreted. Autism has come up a whole lot, which I would welcome if it was the appropriate diagnosis, but what they’re trying to call autism is really just him knowing that therapist doesn’t see him and saving himself the trouble. So it’s been up to me to crack the code of Atticus.

I knew him. I just knew that everything I was hearing from the professionals and their evaluations based on one hour of standardized testing was false. I knew that he was brilliant and creative. I knew that the fact that he could read at 3 meant something and wasn’t just a fluke. The school psychologist who called Atti mentally retarded told me that his reading skills weren’t authentic. They were rote. If he could read than so could a parrot. He didn’t see my boy. But I do.

And as I searched for proof of my belief, I discovered something amazing. Atticus was communicating volumes. You just had to speak his language to understand. So I stopped trying to make Atti speak my language, and I started trying to learn his. I realized that the phrases he repeated from his toys were not just idle games. He was using them contextually to speak to me. He was using them like a rapper samples music and surrounds it with a new context to make something meaningful in a whole new way.

He does not have an official diagnosis of speech aphasia. But it is crystal clear to me that that’s what is going on. He receives language perfectly, but struggles to express language. The words are trapped in his brain.

But the music isn’t. Music flows from him. And he uses the language of his toys because after playing with them so much for so long, he hears the music in them. When he uses those phrases, they come out with the same pitch, intonation, rhythm, as they come out of the toy. Because he’s singing them. Have you ever heard one piece of speech over and over and over again? When you’re rewinding an audiobook, or restarting a podcast, or trying to find the right starting point in your TV show to skip the commercials. If you hear one piece of recorded speech over and over and over again, it sounds like music. You pick up on the pitch and intonation and rhythm that you weren’t paying attention to when you thought it was just speech, and if you hear it enough, it becomes a song. That is the key to Atti’s communication. The speech section of his brain isn’t cooperating, but the music section is. And it is not just cooperating, it’s compensating.

Whenever I need Atti to say something – a response to a question he gets in public, or how to behave in his classroom – we find the music in the phrase. I teach it to him like a melody. And then he can say it.

But that only started to happen once he saw that it was worth the effort. He had to see that I was going to hear him. And for that to happen, I had to go to him first.

Think about how discouraging it would be if no one ever listened to you. If people only told you things about yourself that you knew weren’t true, but you couldn’t make them see. If you had to go through the world with the brain you have now, but a gag over your mouth. You could never correct misconceptions. You couldn’t tell a joke or share your personality. You could never prove anyone wrong. So you’d give up. You wouldn’t try to talk with your teachers because you’d believe you couldn’t change their thinking. You wouldn’t try to pass the psych tests because you’d believe they’d just tell you you were retarded again, so why even put yourself out there? Think about your own emotional life, and then think about how that would be impacted if you could never talk it out with someone who loved you?

I refused to let my boy stay there. Every time he gives me a chance, I snatch it up. When he tries to say something and I don’t understand, I tell him to keep trying, but first I tell him to keep giving me a chance. I make sure he knows that I know how hard he’s trying and that it’s me who needs to make up the deficit. I’m trying to enter his world because he spends all day every day trying to enter mine.

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Father’s Day Sensation

I’m perpetually behind these days, but in case you didn’t see it, here’s my boys being famous. I have watched these commercials dozens of times because they legitimately make me that happy even if my own family wasn’t in it.

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Finding Dory Review – from a kid who knows…

Finding Dory Reaction
I know it’s already been a couple weeks since Finding Dory opened in theaters, and by now, I bet most of the people who wanted to see it have seen it. But I still have a lot of feelings about it that I have to get out. This movie is IMPORTANT, y’all. And I need you to see the message clearly and teach it to your children.

Finding Nemo came out before I was a mom, so I didn’t pay it a ton of attention. I saw it like everyone, but I didn’t examine it.

Now that I have Atti, I’m suddenly aware in a whole new way that Nemo has a disability. Nemo has a “lucky fin” from a birth injury, and the whole movie is about him learning how much he’s capable of and his dad learning how to stop protecting him so much he can’t try. That’s a powerful and beautiful message for a kid like mine, and it’s one we believe. Early in his childhood we worked with a PT that drilled it into me: I had to let him fall. I had to remember that he wasn’t made of glass and that toddlers fall hundreds of times a day. That’s how they learn to use their bodies, and mine was no different. So that’s what we do. I smirk as other moms give me sideeye while I make my kid get out of his wheelchair by himself to play on the ground. When his wheelchair tips over and he falls on his face, the hardest part is dealing with other people’s reactions, not Atti’s. Between our family? We’re nailing the “let your kid do their thing” thing. It’s the rest of the world that makes that hard.

Finding Dory picks up immediately after the events of Finding Nemo, with Dory happily settled down with a reunited Nemo and his dad, when she realizes that she has no idea where her own family is, and her short term memory problems make finding them seem impossible. Dory is nothing if not optimistic, though, so instead of listening to the naysayers and the people who mock her for her disability, she sets off to find them, and of course, after going on a series of adventures, she does.

There are so many beautiful, tender, heart exploding moments in this movie. From my twin positions of someone living with disability and parenting a disabled kid, I could write a thesis about it. But what is most important to me about all of it, is how Atti reacted to it.

There are so few times in his life that he sees ANYONE like him on television as anything other than “The Magical Burden,” that seeing an athlete with an insulin pump on American Ninja Warrior has me dragging him out of bed to make him watch. Disabled people never get to win. They get to teach lessons and die.

But in this movie, not only do you have Dory with her short term memory problem, and Nemo with his lucky fin, you have a blind whale shark, a beluga whale with a head injury, and an octopus who lost a limb and seems to suffer from PTSD. This world is a brutal place for any disability, and each one comes with their own challenges and benefits. I LOVED LOVED LOVED getting to see an array of characters with diverse disabilities, including a bunch of cognitive disabilities, work together, discover their strengths, and be the heroes.

Because of Atti’s cerebral palsy, he doesn’t walk and uses a wheelchair. And that can be real tough. But he also has speech aphasia and struggles to communicate, and that is what causes the heartbreak. People treat him like he’s in a coma. As if he has the thinking skills of a beloved pet. He’s had teachers say to his face that he was retarded and that his reading skills were a fluke. He’s had family members, while he played at their feet, say that it was a shame he would never get married or ask if he liked watching The Simpsons for the colors.

But I know how to speak his language and I know just how much brilliance and insight and heart and bravery is in there, and I won’t rest until the whole world sees it. I will build paths of seashells across the whole of the internet until people see the magic in my kid is not a burden, but the joy of my life.

If you’ve never watched another video I’ve ever made, please watch this one. Show it to your kids. And tell them that there are so many people like Dory out there. And the world is lucky for it.

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Year of Pleasures: Therapy Animal Collector Cards

Animal Therapy Cards

Atti had his hip surgery at Shriners Hospital here in Sacramento, and I thank my lucky stars every day we live so close to them. Shriners is the very best place to be for a kid like Atti, and they also do exceptional work for kids who have survived horrific burns, paying for many kids from developing nations to travel in and receive treatment.

Having a whole hospital geared to the needs of kids is such a tremendous gift for us. There’s a whole floor filled with toys and books and games, flooded with sunlight and pop music and art projects, each kid is greeted with a sack of presents, and my favorite, therapy animals make rounds.

This trip I learned that not only do therapy animals make rounds, but each therapy animal has a collectors card made up. So the kids can have a memento of the great visit they had.

In my utopian fantasies, teachers will be celebrities and instead of cards for professional athletes, kids will spend hours lovingly collecting and trading the cards of adorable service animals. That world would be so much happier.

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Tresa gets a trainer

Trainer

It’s been three solid years of torturing my body trying to have another kid. It’s been over eight years of hoping and trying and testing and measuring, but it’s been three years of hormones and needles and pills and surgeries and procedures and hospitals. It’s not quite over yet, we still have two frozen embryos we’ll be giving one last try before the end of the year, but that’s almost a formality at this point. We don’t expect a different result which means that I’m making peace with having only one child with needs that exempt him from the typical childhood experience. Not a single other part of my life has gone according to how the stories go, so parenting shouldn’t be much different.

I had my major surgery in December, and Atti had his in February. I was still in my recovery window when Atti became completely dependent and needed to be lifted – in a particular way that kept him immobile – several times a day. Which meant that I was carrying this 50 pound kid everywhere he needed to get without functioning ab muscles. It’s amazing my back held out for as long as it did.

But of course I got injured. Caregiver injuries are no joke and I can pretty much count on fighting back and muscle problems for the rest of my life. I have one friend who just had her spine fused because of damage done by improperly lifting her disabled daughter. But children are not free weights. There’s really no way to properly lift a free-spirited child. They work against your proper form.

I can’t blame it all on Atticus, though. My back was hurting me but what sent me into full spasm requiring muscle relaxers and my own immobility was my dumb butt trying to yoga my way out of the injury, but only yogaing my way into full blown seized up muscles. I suck at moderation.

Which makes my trainer even more perfect for me.

When I first started meeting him I was charmed by his hippie ways. He’s a little more open to the woo woo than I am, but I cannot argue with the results he gets. He does this thing called active meditation where he makes me work really hard and then stop and meditate and it works like magic to get me crying about pent up stuff every time. Unfortunately, since my surgery, I’ve been to bad off to use his full skills. Instead he comes over and does some energy work and some deep tissue massage. Somehow he still makes me cry just by pushing on the right spot. Last time he pushed on a spot in my abdomen and I let out a blue streak that would make a sailor who left the sea for the call of the open road and now worked as a longhaul trucker blush. I had to end the session by apologizing for my remarks about his mother.

Right now I can’t do much of anything. I walked a mile around the lake and it knocked me out for three days. I’ve had shin splints for weeks. My trainer has to keep begging me to listen to my body and stop pushing so hard, but I have no chill. I am regularly so bummed out about my current condition that I go right past where I know I should stop just because it’s so depressing that THAT is where I have to cry uncle.

I’m trying though. My trainer keeps promising me that a little bit is all it takes to make progress, so maybe by the time Atti is grown I’ll be fit.

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Please Don’t See Me Before You

You Before Me
Me Before You is opening next weekend, and I’m begging you to ignore it. It’s a real shame because the actors are lovely and I’m sure everyone behind the production is good people, but this movie is dangerous.

Spoilers ahoy:
The beautiful man is a successful dude with everything going for him and then gets hit by a car and is paralyzed. He believes there is nothing for him but death, so his family helps him to work towards physician assisted suicide. Meanwhile, his parents hire a beautiful Manic Pixie Dream Girl to teach him how to live. But! TWIST! Instead of Manic Pixieing her way into his edification, he Magical Burden’s his way into hers. He kills himself anyway after teaching her how to reach for her dreams.

I am actually highly in favor of physician assisted suicide. I live with both mental illness and chronic pain. I understand that there is some pain that is both unrecoverable and unlivable. My problem is not that a man wanted to kill himself. If this was a documentary or a biopic or a film based on a memoir I would bring more nuance to this. But it’s not. It’s a fictionalized love story that relies solely on tropes that are harmful to humans. It sends a message that not having motor skills is to render a person a burden not worthy of life.

The character in this movie would rather be dead than disabled. I posted a link to this essay on my facebook wall and someone came back with their own experiences of facing a similar tragedy and wanting to die so as not to be a burden on their loved ones. People really do feel this way. They are out there and those are their real feelings, but what put those feelings there?

Society. Media. Every message we ever get that says we are only worth anything if we are thin enough or pretty enough or white enough or rich enough. Because all of society makes it so. It is internalized ableism. There are black people who hate black people, women who hate women, gay people who hate gay people. This is what happens when you live in a bigoted world and you are from an oppressed group. You get the same messages as everyone else, and some people believe them. People who would rather be dead than disabled believe the lie that they are a burden not worthy of life. This is what oppression looks like.

So here I am, trying to raise this beautiful brilliant boy. This boy who most days doesn’t want to leave the house because people look at him funny. Who has been invited to two birthday parties in his whole eight year old life. Who is constantly being ignored and talked down to, spoken about as if he’s not in the room while adults guess at what his future will look like. “He’ll be lucky if anyone ever marries him.” they say. Or “You should be happy if he can ever learn to make change.” Who has a handful of people in his life he can count on to treat him like a human being. And THE ONLY TIME he ever sees anyone like him in his entertainment, is when they exist to make other people around them be better people, and then they die.

I’ve written and spoken about this phenomenon, calling it the Magical Burden. (Based on Spike Lee’s idea of the Magical Negro).

Whether it’s Cuba Gooding Junior in Radio teaching a football coach how to feel or Walt Jr. in Breaking Bad giving his father motivation to get money, you won’t see a disabled character actually having their own story, and they’re almost never played by a character with a disability (Breaking Bad did get that part right). They are played by actors chasing prestige and Oscars. These characters only exist to teach lessons and give people without disabilities some perspective. And that perspective is always “It could be worse! You could have a disability!” In the case of this movie, the perspective is “Better live life to the fullest! You could get hit by a bus tomorrow and be crippled forever which is a fate literally worse than death!”

What I need you all to understand is that that attitude hurts my son.

It actually compounds disability. I’m trying to teach Atti to have faith in himself, in the world, that it’s all worth the effort required for him to engage. I’m trying to coax him out of his shell and keep him motivated and every time he turns around all he hears is “Why try? It’s better to be dead than disabled.”

Please think about that. Think about what that would do to you. If every message you got was that it was preferable to be dead than to live the way you live. How could you find the motivation to keep going? As an eight year old child? As a parent, how would you feel if you knew your most important job was to keep your child from believing in the worthlessness the whole world tries to sell him?

This movie is not about a man who wants to die with dignity and control his fate. It’s about a man who believes it’s better to be dead than disabled and a family who agrees with him. It’s about the ugliness in our society that believes self-sufficiency and contributions to the economy are the highest virtues a person can attain. That belittles the soul and the heart and the humanity of people who function differently from the norm.

Please don’t see this movie. Watch Atti on my YouTube channel as he fights to be seen. Watch Zach Anner or Becoming Bulletproof or Josh Blue. Make a friend who uses a wheelchair or crutches. Fight to make sure that all your spaces are accessible. Invite a kid who moves differently to a birthday party.

There is something worse than being disabled. It’s believing that the whole world only sees you as a burden. Do something to prove that’s not true.

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The secret to quality healthcare

Tramadol

In December I had major abdominal surgery to treat my endometriosis. My stomach was expanded with air to a truly alarming size and then each of my internal organs was lasered clean. Including all whatever long feet of my intestines. You might imagine this kind of surgery would require a minute to rebound from, and you’d be right. Digesting is still a trick I haven’t remastered, and my abdominal muscles are shredded wheat.

And then just over a month later Atti had double hip reconstruction, rendering him completely immobile for 8 weeks. Getting him home was so horrible I was *thisclose* to laying down in the parking lot and waiting for a hospital van to run over me. Bathing, feeding, changing diapers, all had to be done without moving his hips. He was a 50 pound sack of potatoes that screamed when you carried him.

So with only shredded wheat abs to rely on, it was only a matter of time before I hurt my back. Luckily I managed to get through the worst of Atti’s recovery and now he’s back at school for most of the day, but for the past several weeks I’ve been doing everything I can to avoid anything heavier than my cats and trying not to scream every time I had to shift my weight.

I went to the doctor, bracing myself for another round of “Pat Tresa on the Head” as another invisible complaint rendered me unbelievable. But I had an entirely different experience. My doctor shot my back up with Lidocaine and then handed me a GIANT bottle of Tramadol since I refused her offer of Oxy.

All I have to do is mention that I’m taking care of a kid with cerebral palsy and the prescription pads come flying out. I have more drugs at my disposal than at any point in my entire career of sickness. There was one point when a gynecologist was prescribing me one pill at a time and insisted that he would not treat me until I went to a therapist. When I start giving my history to a GP, I can feel them pushing me off to the side the more I talk.

But now I know. All I have to do to get pain medication is not chalk it up to a lady disease.

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My Mother’s Day Gift

Mother's Day

Atti has gone back to school. Finally. He still has a whole lot of recovery ahead of him – he can’t scoot yet or sit up unassisted – but he’s back in his red wheelchair which is what we needed for him to be able to get back to his routine. Lucky for me, it was right in time for him to make me a Mother’s Day present.

It came home with him from school wrapped up with a card and a ribbon and I asked him if I could open it then or if I needed to wait. With a smirk he told me I had to wait until Mother’s Day morning, so we set it on top of the fireplace.

Atti’s been sleeping in our bed for weeks now. Being strapped to a pillow to keep his new hip joints in position and then put in a hospital bed too far off the ground for him to get down from even if he could move just proved to be too much anxiety for one boy to take, so he’s spent every night in between me and Bear, his giant leg wedge pushing us so far apart we high 5 to say goodnight. But on Mother’s Day morning I woke up to his arms around my neck and him kissing me awake, no matter how hard I tried to sleep in. He was more excited for this than Christmas.

We went out to the living room for some breakfast and he told me I could open my present. I unrolled a reusable grocery bag decorated with his little handprints in the shape of a sun, and a handpainted card that read, in his own wobbly handwriting, “To Mom: I love you. Love Atticus.”

This is what I looked like:

As I was weeping, Atti just looked at me with a sly little grin on his face. He was so proud of himself. Usually when he brings things home from school they don’t stick around long. I don’t bother saving the work of his teachers, who are usually the ones behind the art projects, but this one was different. From how he made me wait, to his little face when I opened it, to how he was so excited and proud of himself that he couldn’t stop jumping long enough for me to take this picture, it was clear he was behind every part of this. And he felt so good that he was able to give something instead of always being the one in need of giving.

This was the Mother’s Day that I had been dreaming about for years. Full of messy art projects and adorable expressions of love. This was the first year that Atti was really able to express himself. Unless you watch him closely and really take the time to understand his expressions, he seems disinterested in so much of what goes on. But really, it’s not disinterest. It’s counting on people to look past him and not wanting to put in the effort to change their assumptions. But I know how to speak Atticus, so he showed me. He held that damn pencil and he struggled over those letters. He planned a surprise for my special day. He reached way outside himself and he did it to express his love for me. It’s just too beautiful to bear.

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Year of Pleasures: Seeing Atti’s Future

At 8 years old, Atti is starting to cross over from the little kid phase to the big kid phase. And with that comes all the development that starts to freak parents out. All the development that will eventually wind up in independent adulthood, but right now is just kind of scary. And for a kid with significant motor disabilities, it’s even scarier. While many parents are worried about what dating might look like for their kids in a few years, parents of kids with disabilities worry if their kids will even have friendships, let alone dates. I worry that as his body continues to grow that I’ll be able to meet the demands of caretaking. I worry about his struggles in school and what that might mean for his future. If he’ll be able to live independently, be hired at a job, study at college. I know Atti is capable of everyone of those things, but I worry if the world will let him in to try.

Lately I’ve come across a couple of exceptional pieces of media that have rendered me crying in the fetal position, not out of fear, but out of gratitude I could barely contain.

I stumbled across the documentary Becoming Bulletproof while I was flipping through my cable channels and I watched the whole thing with Atticus, despite there being some frank sexuality talk that he might have been too young for. But then again, maybe not.

The documentary is a behind the scenes story of a group of actors making a movie. Only most of the actors have disabilities. You watch as the able bodied crew is constantly surprised at the abilities of the actors – making interesting choices, playing to their strengths, falling in love with someone else on set, having dreams for their futures. You see the intense emotional cost of having to live in a world that doesn’t see you as human. And how that emotional cost actually exacerbates the limitations of the disabilities these people have. You see disabled adults actually expressing adult emotions and experiences in a way that is NEVER done in media.

One of the actors is a man named AJ who has cerebral palsy and I kept stopping the movie to make sure Atti was paying attention to someone on the screen that was just like him. Someone just like him who always had this secret dream of being an actor, but knew he couldn’t make it happen on his own in his current circumstances. But at this camp, a camp for actors with disabilities to go to and make one movie a summer, he could. And you watch him overcome his physical limitations, overcome his hard won insecurities, and deliver a performance. You see how much it means to him to contribute, to have people depend on him, to live his dreams. And I sobbed and I sobbed and then I found him on twitter so I could fall at his feet in gratitude that I had this movie to use to mentor my son through his own limitations and insecurities.

I want every single person who loves Atticus to find this movie and watch it.

I’ve been a fan of Zach Anner’s since I saw him on Oprah Winfrey’s reality show where she was giving away an OWN television show. He was funny and charming and above the usual reality show squabbles because he was really trying to do something more than just be on a reality show. He has an awesome Youtube channel and has just published his first book If At Birth You Don’t Succeed.

Zach also has cerebral palsy and uses a wheelchair to get around, just like Atti, just like AJ. He is funny and winning and vulnerable and in both his Youtube videos and his book he discusses his disability with humor and charm. No self pity, but also no apologies. A lot of the book revolves around his romantic life which I found to be so wonderful. It was full of relatable humor – everyone knows what it’s like to be clueless and fumbling while longing for love – but also really examined the barriers the world puts up for anyone who doesn’t function in the one particular way that most often occurs. He jokes about all the times a curb keeps him from shopping, how his wheelchair breaking down causes no end of problems, how his eyes make reading and school challenging, and all the times he had to find a work around for those barriers or give up. And with his ingenuity and humor he found enough work arounds to accomplish more than most people.

Watch this movie. Read this book. Think what your life would be like if you had different barriers in your life, but the same brain in your head. How it feels to be denied opportunity. And then help me make the world bigger for Atticus.

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More in Viral Adventures

Skater Atti
So, in case you’re not following along on the FB page, Atti’s viral moment is only picking up steam. We’re now in the “local news picks it up” segment of the journey and heading straight for “national news begins to pay attention.” I’ve had to set all my other responsibilities aside as I became his accidental full time momager and suddenly developed a tiny shred of empathy towards Kris Jenner. Just a shred.

We’ve reached the point where I can’t keep track of all the views. So many outlets have shared it on their pages that I don’t know how to even find them all. At last count we had crossed the 20 million mark. Upworthy, Buzzfeed, Ask Men, LittleThings.com, a TV show called Right This Minute, the front page of reddit, trending worldwide on Facebook, and that’s when the local news came calling.

Atti and Dad
First there was the ABC affiliate. And then there was the Fox affiliate. Each news outlet did their own version and I think each story is worth watching because my child is so gorgeous and lovable, but your mileage may vary. Then USA Today picked up the ABC affiliate story and had it on their front page for a minute. AOL.com ran the story.

Atti on CBS
This is a still from my favorite news story so far. The local CBS reporter just got us and Atti put on a full scale charm offensive. He is turning into such a little ham. But mainly it showed me that all the viral notoriety is worth it for my baby to go on the news and tell the world how he loved my kisses. I will never be the same.

Then CBS.com – the national news – picked up the local affiliate story. So did FoxNews.com. And all week my phone has been ringing with other offers, more conversations, more attention. And Atti is just so happy that the whole world is seeing him as a cool kid and not an afterthought or a burden.

I know there are lots of new readers with all this attention, so let me give you the Clif’s Notes. Below is a playlist of all of Atti’s videos on my Youtube channel. And here is a collection of all my best Atti stories. He is not only a great kid, but the best person I know. I’m so proud that the world is getting to see what I’ve always known.

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