Parenthood: The Reality

Subtitle: That Time I Dissed the Show You Love

Parenthood

I know. I’m behind. I’m always behind. Everyone has already seen multiple seasons of some fantastic television show and I jump on the bandwagon after it’s over and done with and put on Netflix in its entirety. Either way, after probably 10 recommendations from people in different walks of life, I decided to give Parenthood a shot.

It’s heartwarming. Truly, it is. It’s interesting. I am invested in the characters and I want to know what happens next. Sometimes, it’s even funny. But here’s the thing. Most people suggested this particular show to me because of one character: Max. Max is on the autism spectrum. At the time this show was originally scripted and recorded, Asperger’s syndrome was still being diagnosed, so that’s the diagnosis of a boy on the show who is played by a child actor named Max who was actually diagnosed with Asperger’s. That part I like.

The other parts? I’m frustrated. While the show does reveal some of the nuances of parenting, teaching, befriending, or even BEING someone different—for example, Max has trouble deviating from routine, he acts out when he doesn’t understand what’s expected of him, he has certain sensory needs and aversions (i.e. the bubbles in the fish tank early on in Season 1 are incredibly loud for him, though most students fail to even notice them), his sister’s needs and interests often go by the wayside because his parents focus on him, his parents worry constantly—it fails to reveal the logistical and financial difficulties of this type of diagnosis. Which are vast. So let’s compare.

Hollywood: Max’s parents are so good that when they feel something is “off,” they’re able to sneak in to see a very well-known, well-respected doctor and get a diagnosis within days.

Reality: I had to book an appointment in May and wait until December to see a developmental pediatrician. This was after multiple evaluations inside and outside my home during which I began to understand that my son would be diagnosed with Autism Spectrum Disorder. Many people told me that seven months was actually a good timeframe. Most people wait 9 months to a year.

Hollywood: Max’s parents hear of an amazing school where students with special needs are given individualized education, so they visit the school, beg for the principal to meet with Max, and even though the principal says they couldn’t possibly accept him, what do you know? They do. During this time, Max’s doctor tells the parents to be aware of the cost, “Think of a regular private school’s tuition—then double it.” But of course, it’s no matter. Hollywood television characters have unlimited funds! Let him start Monday!

Reality: There aren’t a lot of safe, educational places for students with autism. When my son had a horrible experience at a preschool, we had to wait to set up a meeting with his current school. He had to stay at my mother-in-law’s house while we filled out paperwork and scheduled meetings. In our county, there are four possible public schools my son could attend this coming school year with his current abilities and behavioral needs, two of which are quite a far drive and not feasible for our family. That leaves 2 more. Staff members at the remaining two options currently believe that my son may not be strong enough communicatively and behaviorally to handle the program. So my kid is in limbo. The only charter school in our county for students with autism starts in 4th grade. Many private schools don’t employ full-time speech therapists, occupational therapists, and behavior specialists, and often times, they don’t welcome students with IEPs because it’s challenging. The ones that do? Well, they’re either 45 minutes away in another county, or they close after people learn that they’re raking in the dough when they jack up their tuition prices parents have to pay on top of the McKay scholarship. But now I just sound a little disgruntled, don’t I? Moving on…

Hollywood: Max’s behavioral aid starts immediately! She claims she’s $30/hour and Adam laments that it’s expensive but it’s worth it! She sees instant results from Max with no meltdowns or behavior issues at all. She even gets him to talk to and play with a girl at the park for the first time.

Reality: My son has been on the waiting list for every occupational therapist in a 30-mile vicinity for about 2 and a half years. For probably a straight year, I spent my life on google and on the telephone attempting to find him help. Some of these places are ineffective. Some proudly take no insurance. When we visited private places for behavioral and floortime therapy that we loved and believed in, we were quoted $100/hour and recommended to come twice weekly—I’m sorry, that’s a mortgage payment each month. Last summer, when we were able to get a therapist to come to the house—she left after summer was over because obviously her schedule couldn’t possibly accommodate two working parents and a child in school form 9:30-3:50—William resisted working with her. I don’t know? Because she’s a stranger coming into his house touching him and asking him to do things? How come it just can’t go as well as it did on TV?

But wait—it’s not all bad! I will say one thing Parenthood illustrates beautifully is the ignorance surrounding a diagnosis like autism or Asperger’s. The baseball coach who all of a sudden speaks sweetly to Max and tells the other kids to let him back on the team to “just stand there” during games. The friend who offers a Tibetan prayer stone. People who call it a “situation” over and over again. Pity. Disdain. Confusion. Those? The show got those right on.

So go you, Parenthood. I’m sure somewhere, there’s a suburban stay-at-home mom living just outside some beautiful city where autism services roll down like water and her husband’s salary flows like a mighty stream. She relates to this show fully. But that just ain’t me. No, I’m over here with limited funds, limited resources, insurance issues, waiting lists, and a lot of unanswered questions.

But who would watch a show like that? Am I right?

Because It’s All Good: Will Turns 5!

William Thomas,

Oh, sweet boy, if age three was a nightmare (it wasn’t that bad but it wasn’t our greatest year, that’s for sure), then age four has been a dream. You are a dream, William. Truly and honestly. A dream I never even had that came true. And today, you are five.

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A couple of months ago, while I was at work, I heard my phone vibrate in my desk. It was your Abuela, letting me know how your morning was going. She wrote, “He is full of joy.” So simple. But so true. You are full of joy, my sweet William. So many things make you smile, so many things make you laugh, and I’m better and happier for having you and your smiles and laughs in my life.

As a four-year-old, you achieved some great things!

You went to preschool with Ms. Galva for the second year in a row, made a little friend named Kamron, and started taking turns playing with him on the slides.

You learned to write your name! I love seeing projects come home from school with your little scribbled letters on them. Sometimes, you try to act like you can’t write the letter “a” without someone helping you, but Galva and I both know you are very capable!

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You picked out your own Halloween costume and your own birthday cake for the first time as a four-year-old—”Dracula bleh bleh bleh” for Halloween, and a Finding Nemo cake, of course! You fell in love with “Meemo!”

You earned all S grades on your report card for the FIRST time third quarter!

You learned to float and to swim! You are wearing goggles and holding your breath, floating and turning around to reach the wall. You swam across the pool underwater by yourself last month, stopped, and flipped onto your back to float and breathe. Ms. Erin at Seal Swim School is SO proud of you and so are Mommy and Daddy. You have always been a water child, so it’s a relief for us to know that you will learn how to safely navigate the water, and that you will learn to have fun in the water! In the last year with our change in venues and trainers, you’ve progressed TWO levels!

You sing. This is nothing new as you’ve always loved music, but you have learned so many new songs as a four-year-old. You’re a big Justin Bieber fan, and you and Daddy like to sing “Sorry” and “Love Yourself” together. You also get really excited when Alessia Cara’s “Here” comes on the radio. Only you call it “I’m sorry if I” when you ask for it:) You sing your fair share of preschool and Disney Junior songs, and you always choose which number you want when I play your Doc McStuffins soundtrack.

You spell words, William. All day long. I can’t even count each day how many times you walk around reciting “T-R-A-C-T-O-R, tractor.” You memorize letters and and phrases and lyrics like nobody I’ve ever known. You use the First Words Professional app on your iPad almost every day, placing letters into words like puzzles. You start with one section—like numbers or transportation or colors—and then when you’ve mastered one, you move onto a new one. Your brain is always working, moving, taking things in.

The only verb you used last year was “want.” “I want candy.” “I want pizza.” “I want [out]side.” Now, you’ve added more verbs to your repertoire! You can say “eat,” “drink,” “watch,” “listen,” and “go.” It’s the sweetest when you grab my hand and say, “I want listen a music” and bring me over to your keyboard.

You made great strides in speech and I received my first video of your session this year, in which you answered all of the questions in your “About Me” book. I think my favorite was when you said, “I feel happy.” Ms. Vicky told me that you don’t always choose happy, sometimes you’ll choose tired, but most days, you’re happy. Ms. Vicky is your buddy. She knows and loves you and believes in you, and after maternity leave, she came back and you were SO happy to see her again—she’s one of the only people other than Mommy and Daddy that you ask for by name.

You are going into kindergarten in the fall. Kindergarten. At a new school. With new teachers. And new lessons. And new friends… Mommy and Daddy are a little bit nervous, but you did so well this year that we are hopeful that you are going to soar in kindergarten.

You love Pete the Cat! You can recite Pete the Cat: I Love My White Shoes word for word, including singing the song. I think my favorite is the imitation of the guitar music you do, or at the end when you say, “It’s all goooood.”

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You are obsessed with Jeeps. You pull Mommy and Daddy’s arms in every single parking lot, searching for Jeeps to touch. I’m so grateful for this new focus, because Daddy bought you some toy jeeps to play with and you’re learning to play with them so appropriately and entertain yourself, driving them up and down the walls, the floors, the dining room chairs. You are so much fun to watch!

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I’ve always felt lucky that you are mine. But this year in particular, I realized how truly moldable, adaptable, and patient you are. When we drove to Miami, when we visited Busch Gardens, when we were bumped and moved and had to stand in long lines in the sun at the Strawberry Festival, when dinners are late and when Mommy goes to the gym and when Daddy has to work and when there is school and when there’s no school, you are always the same. You are happy and you are peaceful and you are so easily contented, no matter where we are. You don’t get overwhelmed in crowds—and if you do, you stick your fingers in your ears to let us know—you don’t fuss at restaurants—unless you factor in that you choose to always STAND in the booth and look at the patrons behind us or hide underneath the table with your head on the chair like a pillow. And in those small, few and far between moments when you do get stressed or when you’re not yourself, we’re there to work through it with you, and you make it so easy. A dark, quiet room at the Marlins Park. A quick listen to Ed Sheeran’s “Thinking Out Loud” on Mommy’s phone. A stop at the park to suh-lide!

You are easy, William. You are the easiest person to love. The easiest person to please. The easiest person to be around.

Sometimes, you can be demanding. And I love it. Like when you look me in the eye before dinner is ready and say, “I want to eat a candy” and you pull me to the refrigerator because the answer is never “no” when you use your words. Or when you hand me the remote and say “Paw troll” or “Nemo.” Or when you sit in the backseat of the car and tell me to put my visor down “close it, close it”—why does that bother you so much? Don’t you realize the sun is in Mommy’s eyes?—or when you request 4, 13, 19, 20, then 19 again, and again, and again on your Doc McStuffins soundtrack in the cd player.

You are no shirt, no pants, no shoes, up to your waist in the Gulf of Mexico peaceful. You are bending over with your head in between your legs and your arms stretched out or rolling napkins behind your knees odd. You are walking barefoot up the slides at the playground free.

And you are mine.

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For Christmas, Santa left a brand new keyboard at Mommy’s friend’s house for you, and it’s one of your favorite gifts. You love to push the demo button and listen to the instrumental versions of songs like “It Had to Be You” and “Killin’ Me Softly.” One song in particular that plays on your keyboard is a song I loved as a child—“Everything I do” by Bryan Adams. It reminds me of riding in the backseat of your Gramps’ car listening to his radio. It reminds me of Robin Hood, of fairy tales and heroes and love stories.

When you first started enjoying this song, you would ask me to pick you up so we could dance together, and I would sing to you. Now, you like to stand by the keyboard to make sure it goes to the next song. But I’ll never forget those moments when you would hear the first few notes and come running into the other room, take my hand, and say, “Pick up.”

So this year, “Everything I Do” is our song, William. My birthday song to you.

Look into my eyes, you will see

What you mean to me

Search your heart, search your soul

And when you find me there

You’ll search no more

Don’t tell me, it’s not worth tryin’ for

You can’t tell me, it’s not worth dyin’ for

You know it’s true

Everything I do, I do it for you

Look into your heart, you will find

There’s nothin’ there to hide

Take me as I am, take my life

I would give it all, I would sacrifice

Don’t tell me it’s not worth fightin’ for

I can’t help it, there’s nothin’ I want more

You know it’s true

Everything I do, I do it for you

There’s no love, like your love

And no other could give more love

There’s nowhere, unless you’re there

All the time, all the way

You know it’s true

Everything I do…

I do it for you.

Your Daddy and I do everything with you in mind. This year, Mommy took a new job helping teachers who work with students who struggle emotionally and behaviorally because they’re different. Some of those boys and girls are like you. Some days, Mommy and Daddy feel guilty. We wonder if our work in schools is making a difference. We worry that we should we more focused on you and less focused on other children. We question are we living in the right place, are we doing the right thing. And at the end of every day, you show us such love and devotion and let us know it’s okay. You’re teaching us, William. Every day. We would do anything for you, give you anything, help you with anything, provide you with anything. We hope that what we are doing every day in our jobs is for you. That we are helping to create a world that embraces your peaceful, odd, and free spirit.

We love you more than you’ll ever know, baby boy. We are rooting for you. We believe in you. And no matter what everyone else is doing, follow Pete’s lead: just keep walking along and singing your song. Because it’s all good.

Now let’s go meet Jake, Sofia, Handy Manny, and Doc McStuffins, and live it up. Because you’re FIVE!

Happy happy birthday!

Love,

Hi Baby (Mommy)

To Be Happy

Shelby: “Whenever any of us asked you what you wanted for us when we grew up, what did you say?”
M’Lynn: “Shelby, I’m not in the mood to play games.”
Shelby: “Just tell me what you said, Mama. What did you say?”
M’Lynn: “The only thing I have ever said to you, ever, is that I want you to be happy.”
-Steel Magnolias

Recently, a woman posted a status on Facebook expressing her fear and sadness concerning her daughter’s future. Her daughter, who was diagnosed with severe autism, may never move out. She may never live independently. She may never get married.

I’ve thought about these things before. When I see friends post cute little memes about how they’re not just raising men, but they’re raising someone’s future husband and father, too, I think about my son and wonder if he’ll ever be a husband or a father.

But honestly? Those things don’t seem to mean as much to be as they mean to other people. And I’ll tell you why.

I know people my age who are happily married. I know people my age who have already experienced divorce. I know people my age who have had their hearts broken once, twice, three times. I know people my age who are complacently stuck in relationships that may never progress. I know people my age who are single and enjoy it, and who are single and miserable about it. I know people my age who are in committed gay partnerships, some who are even married now (yay 2016, amirite?), and some who raise children together—natural, artificially inseminated, fostered, adopted. I know white, Hispanic, black, Asian dating and married couples, and I know mixed race couples. I know people my age who are single parents. Some who tragically lost the loves of their lives through natural causes or freak accidents.

Life doesn’t always turn out the way you think it will. And let’s face it: everyone’s future is different and unpredictable.

Let’s take autism out of the picture and pretend just for a second that my son is a neurotypical (this IS a word—damn you, autocorrect for trying to change it) child who will, with pretty strong certainly, live independently one day. He might plan a white wedding alongside a beautiful bride. He might marry a man instead. He might suffer through an ugly divorce, or quietly sign papers for an amicable one. He might have children, or he might decide parenthood isn’t for him. He might devote himself to a woman and live with her, father her children, but never propose. He might get his heart broken. He might dedicate himself so much to a career that he never has time for relationships. He might promiscuously flit from lover to lover. He might marry his high school sweetheart like his daddy and live happily ever after. He might be attracted to blondes or brunettes or redheads. He might not have a type at all. I might dance with him on his wedding day. Or he might elope. He might, dare I say, stay single for years and years.

Are some of those scenarios more preferable than others? I suppose so. But they’re all possibilities, right? I’m not arrogant enough to believe that just because I raise him in a home with two high school sweethearts who stay together, manage careers, raise him—that he’ll choose the same path we did. That’s not exactly a fair assumption, is it?

So let’s put autism back on the table. Because of William’s developmental delays, communication struggles, and diagnoses, we cannot know with any certainty what he can achieve yet. We believe in him and his ability to learn and progress. We believe that he will do things that will blow our minds. We hope to see him excel in school and select a job or trade of some sort.

But really? We just want him to be happy. What more does any good parent really want for his or her child?

And if he is 18, 19, 20, or even 30, unable to function completely, safely, independently in the big bad “real world,” move out, rent or buy his own place, participate in a relationship of some sort, I suppose I might have sad days. Because it’s the natural progression for a child to move on and start a life of his own as an adult.

But when I read that post on Facebook, I couldn’t help but let one selfish, strange thought cross my mind: If William does not possess the skills to leave my home or to choose someone to marry and spend his life with, how lucky am I that he will belong to me forever?

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How lucky would I be for him to always, always be mine?

It may sound simple. But those little thoughts? They comfort me. Do I hope that his transition into adulthood goes smoothly and he can choose where to live, what to be, who to spend his time with? Of course. Do I hope that he owns a home one day and he can invite me over for the holidays or throw me out when he’s done with his mommy being in his face? Absolutely.

But right now, William is the happiest human being I know. And the only thing I will ever, ever say to him ever is that I want him to be happy. So no matter where he is and what he’s doing, if he’s happy, I’m happy. Simple as that.

I Get Me.

I remember when all of my relationships were conditional. Not my relationships with my parents or my brother, which were just based on them being my parents and my brother. I’m talking about other relationships outside my home. I remember when I had ulterior motives, hidden agendas. When I pitied others because they didn’t think, act, believe, or perform like I did. When I frowned upon those who didn’t serve God like me, and willed myself to change them. To win them over.

Sometimes, an unforeseen trigger sends those memories rushing to the forefront of my mind, pestering me and reminding me of what I’ve desperately tried to bury. The names of friends I lost and acquaintances I mistakenly and blindly trusted flash before my eyes. And I’m there again. I’m 14. Broken. Needing answers, attention, forgiveness, validation. I’m there again. I’m 15. Yearning. Searching. Seeking. Questioning. Leaving old friends behind. Needing answers, attention, forgiveness, validation. I’m 16. Growing. Avoiding. Isolating. I’m 17. Struggling. I’m 18. Moving forward. I’m 19. In the immortal words of Britney, not a girl, not yet a woman. I’m 20. 21. 22. Stuck in place. 23, 24, 25… Slowly, and finally detaching.

10 years of my life. Devoted. Dedicated. Distorted.

I thought about an old friend tonight. Someone who rarely contacts me (though I know she still loves me) because we no longer see eye to eye. Our lifestyles and beliefs differ. I no longer read the Bible cover to cover or vow to pray a certain number of minutes each day as my New Year’s resolutions. I no longer sing in my church choir or pick out ensembles for Christmas Eve candlelight services with lit up nativities. I no longer attend Hillsong United concerts or read Joel Osteen books (jk—I never read Joel Osteen books). And when I really mulled over our relationship, and the lack of contact, I came to a staggering conclusion: she feels bad for me.

I know she does. Because I used to feel bad, too.

My friends who couldn’t understand what had changed between 8th and 9th grade. Why I wanted to go to church instead of football games. Why I went to my church homecoming with a 6-inch rule between dancing partners instead of my high school homecoming. Why I wouldn’t go to parties, and then eventually, why I wasn’t invited. Those friends? I felt bad for them. I pitied them. Condescendingly, I believed I was better. I knew better. I behaved better. And beyond that, I was taught that it was my job—my duty in serving God—to save them. Or their blood would be on my hands.

Did you hear that?

Blood.

Everyone I spoke to. Every cashier at a grocery store, every shopper at a mall, every fellow student I came in contact with in high school, every professor in college, every extended family member living out of state, every neighbor down the block. Blood. On my hands. I was taught this. Explicitly. From a book and a pulpit I trusted.

So I felt bad for those around me. The ones who couldn’t look up at the sky and quote scripture and know an omnipresent, omnipotent god cared for them and ordained their every step.

But.

I’m different today. I feel like I know myself and understand my own idiosyncracies so much more deeply, which I guess is what should happen as a person goes from 15 to 25… and then almost to 30 (ew—I’m going to be 30). I never knew myself back then that I was wrong to treat people with a catch. How could I have? I was a child. I’ve found myself in many different assets of life and the things I’m still unsure of? I’m okay being unsure. I’m okay not being in control of every single thought, of not knowing absolute truth, of allowing myself to question, of relying on science and on medicine to help me instead of believing that God would fix me if He wanted to. I’ve found myself in reading novels and writing stories and teaching my students and collaborating with colleagues and improving my health and fitness and sitting on the sand at the beach and loving my husband and son.

Now, the me you meet? I’m different. If you carry crystals and find solace in hiking up mountains, I want to see your pictures, hear how those crystals ground you, feel the beauty in the places you’ve been. If you believe in God, I want to smile with you when you experience the positive opportunities you believe are answers to prayer. If you relieve stress by bench pressing and squatting, I’ll do a set with you. If you believe in science, I want to discuss the formation of the earth and our planet’s energy crisis. If you follow a religion I’m not familiar with, tell me about it. I’m open. I don’t want to change you. I don’t want to win you. I just want to get you know you. So many people in my life that I met in college, in my career, through the website I used to write for, via social media and parental support websites–I wouldn’t have made those connections if I hadn’t let go of my ulterior motives. If I hadn’t severed the ties that bound me.

I’m open now.

I was never open. Because I was always right. My old friend, she was always right. She still thinks she is always right. And my openness is probably uncomfortable to her right now. It may always be. And I get it. I truly do. Because I was her. And if she pities me because she cares about me so deeply that she worries about my eternal soul, I love her for that. That’s a burden I don’t carry anymore and I remember the weight of it crushing me day by day. I know she means well. I meant well 15 years ago. At least I want to think I did.

I’ve learned and I want to teach my son, to just accept people. No conditions. No strings. No ulterior motives. No persistence in making them different other than just genuine care for their wellbeing and leading by example.

So here I am, no longer condescending to those who don’t believe as I do, not judgmental of those who believe as I used to, and not offended by anyone who pities me or shies away from me because I’ve changed.

I get you. I really do. And I think I only get you because finally—finally—I get me.

No Point

Every Christmas, my husband and I watch one of our favorite movies: The Holiday. It’s not really a Christmas movie per se, but the setting is a mixture of London and Los Angeles over the holiday season, so we always work it into our schedule.

There’s a scene in The Holiday that always stands out to me. Iris (Kate Winslet) finds out that Jasper, the man she is hopelessly devoted to even after he breaks her heart, proposed to one of their coworkers. Iris goes home from work after the public announcement, puts on sweats, and sobs into her sleeves while brewing some tea. The part that gets me is when she takes the pot off the stove. She stops for a minute, then leans over to inhale the fumes from the gas stovetop as if she’s realized she has no reason to live. After about two inhalations, she blurts, “What am I doing?” She turns the knob on the oven, opens the window, breathes in the fresh winter air, and slaps herself, saying over and over, “Low point. Low point.”

I’ve always thought there were two meanings to this phrase in her mind. First, she was at a low point in her life and didn’t see the point of living a lonely life without the man she loved. Second, she came to her senses and saw her low point for what it was. There was no point in ending her life over this man.

I often have days that feel pointless. As an autism parent, there are things I just don’t get to experience the way the parent of a neurotypical child does, and it can be disheartening. Though guilt rises up in me admitting this, I ask myself frequently, “What’s the point?” Then I have days when I remind myself that it’s just a “low point” and there’s no point in wallowing in self-pity. My son is my son and we do what we have to do.

In May, my husband and I had plans to take our son to see Frozen on Ice. My son came down with something and we took him in to see the on-call doctor who prescribed medication for him and then went on to say that we probably shouldn’t take him to the show. “He’s not contagious,” she said. “But it’s a better idea to stay away from crowds so he doesn’t pick up something else. Plus, he doesn’t really understand so he won’t know what he’s missing anyway.” I stopped listening, calmly excused myself, and made it to the car before my husband and I both shared tears over her tactlessness.

She said this garbage in front of my son. She had “known” him for about five minutes. And in that small amount of time, she determined what he could understand and what he couldn’t. She assumed.

I seethed. My son loves Frozen. He loves Bubble Guppies. He asks to go bowling and to go to the beach. He picks certain foods and avoids others. He’s not stupid. He’s not unresponsive. He’s alive and well and he’s a person with likes and dislikes just like you and me.

So we took our son to see fucking Frozen on Ice. And he watched. And he smiled. And in my head, I punched that doctor in the throat. Because on every level, human and professional, she was dead wrong.

Friends and family members jumped to defend me and shared in my anger when I posted about the situation on Facebook. They supported me and commented on all the pictures of William clapping along with his favorite Frozen songs. He wasn’t 100% himself because of his ear infection, but he had a couple of days of antibiotics in him by the time we went and damn it, we were going to Frozen on principle alone at that point.

One of my friends genuinely asked me via private message, “Would William know the difference?” I thought about it. He had never been to the Amalie Arena. He had never seen any show on ice. He had never seen a person ice skating, come to think of it. That had nothing to do with autism, though. So I told her that he understands we are seeing Frozen. I told him it’s in a big arena. I told him we’re going with his aunt and his daddy. He could think we’re just going to watch the movie. But couldn’t any four-year-old think that? Any child might not be able to picture or grasp something brand new to them. And I like to think even if he couldn’t picture the entire setting, he was looking forward to it.

I think people, like this on-call doctor, often believe there is no point in attending big events or attempting to celebrate holidays with children with special needs like William. Because they don’t react the same way. Or they can’t experience it in the same way. But this is funny to me, because how many people do you know who take their infants to Magic Kingdom to meet Mickey Mouse? How many spend hundreds or thousands of dollars on Christmas gifts for a child who will forget the toys and play with the boxes? How many of us throw Pinterest-inspired first and second and third birthday parties that are really more for the invitees than the guests of honor?

Here’s the thing: memories aren’t just for the child. They’re for the parents, too. We do these things to see our children smile, sure. We do them to build our families. And we do them to make ourselves happy, too.

Every year, I’ve selected William’s Halloween costume. I remind him how to say “Halloween,” “trick or treat,” “pumpkin,” and other seasonal phrases. I take pictures and I laugh at him holding a pumpkin full of candy. But it’s hard repeating myself year after year. I shouldn’t be teaching my four-year-old to say “trick or treat” when that was all he could say two years ago, right? It’s hard. But you know what? He is what we have. He is who we have. His abilities are progressing every year, slowly. So we embrace it.

He was an astronaut. Then Jake and the Neverland Pirates. Then Danny Zuko from Grease. Then Albert Einstein. This year, because he loves watching baseball—specifically, the Tampa Bay Rays—I decided to buy him a Chris Archer jersey, fro out his crazy hair, find some baseball pants and cleats, and make him a Rays player. I knew he would like it.

But this year, I faced a couple of obstacles…

One of my friends asked me about William picking his costume. Though I’m pretty open about our struggles, people—out of both ignorance and sheer curiosity—ask questions or make comments that remind me that we’re different. Her question kind of took the wind out of my sails. Would he ever pick his own costume? Should we even try? What’s the point?

Then, William all of a sudden developed a sensory issue with button-up shirts. I started worrying that the jersey thing wouldn’t happen. He wouldn’t wear it. Should I even try to get him to wear it? What’s the point?

On Labor Day, my husband and I took our son for a ride to the Spirit Halloween store. I thought maybe, just maybe, he’ll walk up to a costume that catches his eye.

Wrong.

My son, like always, wanted to run up and down the aisles over and over again. He wanted to push the button that awakened a screaming banshee hanging from the wall over and over and over again. He wanted to see the red lights on the zombies and the smoke coming out of the wolf’s mouth over and over again.

I sat on the floor of an aisle and text my best friend while my husband chased my son. “There’s no point,” I sent her. No point in asking him to pick a Halloween costume. While little boys and girls around me pick their Teenage Mutant Ninja Turtle and Elsa costumes, my little boy repetitively pushes buttons and runs in circles. Oblivious. My emotions spiraled. No point in Thanksgiving. No point in Christmas. No point in Easter. No point in birthdays. He doesn’t even notice. I felt tears coming. Then a text message came in.

“He’ll get there,” she answered. And she’s right.

I stood up, put on my bravest face, and walked toward where my husband and son stood. I was determined to try, and I was determined to not fall apart if my attempt failed.

I took my son’s hand and said, “William, first we need to pick a costume. Then we can push the button.” He said, “Push button.” I said, “First, let’s pick a costume.” And I had an epiphany. Choices. Too many choices.

I walked up and down the aisles in the boys’ section and selected things he would recognize. “Look, Will, it’s Woody from Toy Story!” I said. “Cowboy,” he said. “Look, it’s Superman!” “Superman!” he repeated. “And this is Dracula from Hotel Transylvania. We watched that night.” I did my best Dracula impression, “Dracula—blah, blah, blah.” And he laughed. “And this one over here is Hiccup from How to Train Your Dragon. He’s kind of like a knight because he’s wearing armor. We’ve seen both of those movies.”

I put all four costumes on the floor. “Do you like any of these?” I asked him.

He pointed. POINTED WITH HIS FINGER. Which he never does. He pointed at the vampire costume and said, “Dracula blah blah blah!” And he smiled.

He picked his costume, guys. For the first time.

He probably didn’t pick it like your kid picked his costume. But he picked it.

We did the typical autism parent thing and put the shirt, pants, and cape on, which he yanked a couple of times, and then we distracted him by giving him what we promised: the chance to go push the button to make the hanging woman scream again. (That sounds kind of morbid, doesn’t it?)

He ran through the store, the Dracula cape flying behind him. He pushed the button, flapped his little autistic arms excitedly, and left that freaking costume on for another twenty minutes. It’s a winner.

Sometimes, it seems like there’s no point. It seems like he won’t understand. It seems like we can’t experience the “normal” things.

But really, there’s always a point. Always. Because he’s the point. And he’s a seriously cute Dracula… blah blah blah.

Dracula

Supply List

It’s that time of year. Jansport backpacks and colorful pencil cases, busy aisles of tax-free clothing and shoes, stressed out parents and anxious students, schedules and pickups and drop offs and extracurricular activities.

Yesterday, I spent about six hours moving furniture, cleaning, and organizing my new classroom. It’s not completely done yet, but I made a pretty good dent in it and if I’m honest, I’m feeling good about starting a new year. I’ll be teaching Freshman English, Journalism I, and Yearbook: all subjects I taught last year and all subjects I actually enjoy. So I feel prepared.

Planning week starts on Monday, and though I’m slightly stressed about the amount of meetings I have to attend, the number of papers I have to type and copy, the posters I need to hot glue to my walls, the litany of appointments I have to work around for my son, I’m optimistic.

Tonight, I started thinking about my future students and what I want them to learn this year. Last year, I assigned my students a group project to write a “Dear Future Freshman” letter or song. So I started playing with the idea in my head… What would I write to my future students? Instead of taping a supply list of index cards and Kleenex boxes to my classroom door, what if I came up with another supply list? What do I want my kids to know before they enter my room?

Dear Future Students:

In a little over a week, you will walk into my classroom for the first time. You’ll have a syllabus to sign, school policies to review, and a seating chart to follow. You’ll surely be curious about the class expectations and goals for the year. Yes, there are common core standards to master, and yes, there is FSA testing to pass. But in my class, I want you to learn more than that.

More than that? you ask. Yes. More. Because English goes far beyond grammatical errors and “i before e except after c.” It goes beyond main ideas in the first sentence of a paragraph and context clues. It goes beyond firstly, secondly, thirdly, and in conclusion.

So what do I want? First item on your supply list: An open mind.

I want you to dive into literature head first, whether you like it or not, and realize it applies to real life. I want you to take messages from powerful nonfiction, and to pass on the power and peace of orators like Martin Luther King, Jr.

I want you to write so descriptively that the person reading feels the emotions that coursed through your mind and body the moment you penned the lines.

I want you to read a short story or a novel or a play and identify with a character–with his hopes and dreams, with his successes and failures, with his quirks and mistakes–because even though he’s so incredibly different from you (he’s from a different era, perhaps, or a different culture, a different nation altogether), he really is a lot like you. And somehow, you find he’s a lot like everyone else, too.

I want you to absorb poetry with all five of your senses and listen to the lyrics of your favorite songs in a way you never have before.

I want you to improve your vocabulary so that your girlfriend doesn’t just know you think she looks “pretty.” She knows you think she’s stunning. Exquisite. Breathingtaking. I want her to know you’re not just interested. You don’t just like her. You’re enraptured. Entranced. Bewitched. Captivated.

I want you to argue. With me. With your classmates. With yourself. To understand why you believe what you believe and to allow others to challenge those beliefs, no matter how deeply rooted they might be. I want you to talk, yell, laugh, ask, and answer. I want you to play and draw and act out and pretend.

I want you to use technology correctly, to research for real and check your sources before spewing and forwarding rumors on Facebook and Twitter.

I don’t want you to simply remember or recall. I want you to apply, to analyze, to synthesize, to hypothesize.

I want you to recognize that a big world exists beyond Holiday, Florida, but that your world here is important, too.

I want you to respect one another and to respect me, to appreciate similarities and differences, and to behave as a young adult.

I want you to know that I care about now, and I care about tomorrow, and I care about your future. I care about academics and extracurricular activities and your personal life and struggles, as well. I want you to know that you’ll have bad days and I’ll have bad days. If you have a bad day, you can tell me or not tell me. You can leave it at the door and come in to work or you can ask for a break.

I want you to learn about yourself and to learn to value and listen to others.

I want you to know that if you never like me and you never like English, that’s okay. You don’t have to like it. But you have to know how to properly use it.

I want you to grasp the literal and figurative. To spend fifty minutes a day stretching yourself, expanding your intellect, enriching your mind.

And maybe at the end, pass a test or two.

See you Monday,
Mrs. Rodriguez

On Being Something Else

They tell you to find yourself. As a child, they ask you what you want to be. What do I want to be? You say alive, you say happy. No, no, what do you really want to be? The answers you give aren’t enough. They’re too vague. Okay, you say. Then you give a better answer. You say superhero, professional baseball player, princess, ballerina. No, no, they say. They want to hear police officer, firefighter, teacher, lawyer. They want to put you in a box of textbooks and scholarships and medical school applications, close the lid, and seal it with packing tape just so, to send you into the real world. Ready to find yourself. Ready to be yourself. But selecting from a predetermined list of choices, of careers, doesn’t necessarily help you find the real you. In fact, that very same choice may actually hide you for a while. Or for always. You might get lost in it. Think it’s all you’re meant to be.

I made choices throughout my life, and still do. As a child, I wanted to be a writer. Piles of filled journals and typed up pages decorated my bedroom and closet floor. And in my head, ideas and words flowed faster than I could pen them. But writer wasn’t on “the list.” So, as a child, I decided to become a teacher. I played school with my little brother. I liked being the boss. I enjoyed seeing my handwriting on a white board and smelling the dry erase markers—I still do. As an adolescent, I made choices. College is expensive, they said. Going out of state is even more expensive, they said. I wouldn’t want to leave my home, my boyfriend, my family. I made choices. There’s no money in writing, they said. So I made choices.

I majored in education. And I loved it. Many days, I still love it. But I know I won’t “find myself” in a classroom, walking between desks, ticking off boxes, making copies, learning this year’s evaluation system and next year’s standardized assessment format. I may help a student find him/herself, and for that, I feel extremely fortunate and satisfied. As for me, I’m still wandering.

I made choices. My husband and I started a family. The identity I knew muddled as I figured out my changing roles. Wife. Teacher. Mother.

My husband and I are fortunate that most of our plans—even if sometimes I think they were the “safe” plans—panned out well. We are fortunate. We own a home and rent a beautiful better home. We have a happy, physically healthy child and a well-behaved dog. We have a good relationship with each other, with friends, co-workers, and family members. We get to go on dates and have money for hobbies. My husband has received multiple promotions. I love the school where I work and I love the school where my son attends and receives so much support. We are fortunate.

But in some ways, our life doesn’t look like what we pictured. In one particular way, our roles have evolved into something we never expected.

We are special needs parents. Autism parents. Something I’ve noticed is that autism crept into our lives slowly, unassumingly, and then one day, it forcefully took over. Took over our thoughts and our decisions. Took over our conversations before we fall asleep. Took over my Facebook and my blog. Took over our free time—I can’t even remember having any.

Thing is, I don’t want to be just an autism parent. Like I don’t want to be just a teacher or just a wife.

Every person, in his or her life, wears multiple hats. Right? So why have I taken off so many of mine and tossed them into a hall closet?

While I do have to drive my son to appointments and fill out paperwork, and while I may need to consult support groups and Pinterest for speech and occupational therapy ideas when I’m home with my son over the summer, and while I may vent on my blog once in a while, I can’t be just an autism parent anymore than I can be just a teacher or just an anything.

I need to be a full, healthy person.

For a the last almost three years, I have found myself on the treadmill and yoga mat and machines at the gym. I have found myself in sweat and tears and growing muscles and shed pounds. I have strengthened myself physically and mentally, and I will continue to do so. Because it makes me feel healthy. It helps me keep going. And recently, while I was running, I thought about something else that would keep me going.

So I made a small decision. A very small decision.

Right now, I can’t make big goals. I can’t commit to a Master’s program (I was thisclose to starting one over a year ago, and I’m so glad it didn’t work out). I can’t and won’t be changing jobs. I can’t make any huge moves in my life right now because my son has to be my focus and because I want his development to be my focus and my little family to be my focus. But. I can make small steps to continue to “find myself” and “be myself” in the midst of this crazy special needs parenting life.

This summer, William is attending extended school year for 10 half days. During those three hours a day, I am going to try to avoid the housecleaning, the laundry, the cooking. I’m going to try to stay off my Autism board on Pinterest and leave the lesson plans for August. My decision is that I am going to reread the novel I completed in November. I’m going to delve into it with a fine-toothed comb, edit it, make some contacts out of state to verify the validity of its setting, and begin the process of self-publishing.

Because deep down, if I’m being honest, where I really find myself is in every thought, every handwritten word, every tap of the keyboard, every sentence of every chapter of every story I write.

That’s where I live. I think as a child, as an adolescent, as a student, as a teacher, as a wife, as a mother, as a sister, as a daughter, as a friend, as the parent of a special needs child, it’s where I’ve always lived. It’s where I belong.

And I want to—I have to—even if for a few short hours of the day, be something else.