My Michelangelo.

Oh my independent one,

Today, you are seven years old.

7thbirthday4withsharpen.jpg

It seems like only yesterday that when you cried, felt overtired, or just woke up from a long sleep, I could snuggle you and squeeze you and comfort you. But it wasn’t yesterday. It’s been quite a long time—except when you had the flu, of course—since you’ve needed Mommy to soothe you or baby you. Last year at this time, I had a kind-of-sort-of big boy finishing kindergarten. This year, there is no denying your lack of babyhood. You are my tall, skinny first grade boy and every day, more and more, I am inspired by the independent person you are becoming.

One of my favorite memories in your year as a six-year-old happened during our Eastern Caribbean cruise last summer. Daddy, you, and I boarded Harmony of the Seas to visit St. Maarten, Puerto Rico, and Haiti. It wasn’t your first cruise, but it was your longest and you enjoyed every single second of it. You got to ride on a yacht, swim in the ocean, watch airplanes fly overhead, and even meet your greatgrandfather for the first time. But secretly, those weren’t Mommy’s favorite moments. While Daddy went off to play one day, you and I spent some time together, and the most precious moment for me was when you and I relaxed in the infinity spa. You kneeled on the step in that hot tub with your elbows over the edge, looking out at the horizon like the world and everything in it belonged just to you. I love watching you watch everything else—seeing the world through your eyes is a beautiful thing, and I think if a genie granted me one wish, I would wish to take a stroll through your inquisitive little brain to hear your thoughts about what you see.

Infinity Spa

On the cruise, every night, we ate dinner and then walked around the ship. You loved riding the elephant on the carousel and playing the claw game in the arcade. As a matter of fact, that cruise ship was where you first found your love of “pluppy duckies.” The claw machine company says Plucky Duckies, but call it what you will. We spent months finding claw machines in every mall and arcade we visited and Santa Claus brought you your very own set of multicolored pluppy duckies and your very own claw machine! I’m always impressed at how well you can capture the toys!

Just like every year, this last year brought some changes. In October, we realized you were very unhappy in your school, and so Mommy and Daddy found you a new school. Your entire schedule changed—Abuela no longer drove you to school, we had to leave much earlier, you met new teachers and new students and new therapies—but you rolled with it, like you always do. I know that unexpected changes to routine can be anxiety-inducing, but you have embraced your new school and our new normal. You are my DJ on the long drive in the morning and afternoon, telling me which songs to play: Sia’s “Chandelier,” Clapton’s “Layla,” Chris Brown’s “Forever,” Ed Sheeran’s “Don’t” and “Sing,” Gorillaz “Feel Good,” Pink’s “Raise Your Glass,” Coldplay’s “I Want Something Just Like This” and “Adventures of a Lifetime.”

Some of the things from this year that I never want to forget:

-You carrying Mickey Mouse every place we go and filling your bed with all of your friends before you go to sleep.

-The way you pretend your wooden trains and toys are rides from Disney World: Splash Mountain, Big Thunder Mountain, Tower of Terror.

-Your constant whistling, something nobody taught you but you do so well.

-How if you hurt yourself, you ask me for a “feel better” and take the Band-Aid I give you to put on top of your boo-boo.

-The way you can spot a Jeep across the parking lot, and when we’re driving, you say, “Hi Jeep, bye Jeep!”

-Your communication skills and how hard you to try to be heard. This year, you finally started commenting on things. It is music to my ears to hear you step in the tub and say “It’s too hot” or refuse to go down a slide at the playground because “It’s wet!”

-Your imaginary play. With Ms. Amanda, your speech therapist, you like to play with the baby doll and put her in the swing, on the potty, and tuck her into bed.

-Your face when you rode the Harry Potter Hogwarts Express train at Universal Studios with Daddy, Mommy, and KK.

-How when I needed my nails fixed recently, I debated stopping at the salon with you, but figured for the first time, I would give it a try. You amazed me and sat perfectly still with your Mickeys on your lap. Another client complimented your good behavior. We live in a difficult world that isn’t always kind to people who are different. I know that sometimes, you have been mistreated for your struggles and this time, a stranger commented on what a good boy you are. I’m so proud of how far you’ve come! I know you’re special, but it means a lot to know others see it, too.

-The way you lock the door when you use the bathroom because apparently at almost seven years old, you require extreme privacy.

-Your funny little missing front tooth, just a few days before your birthday, as if I needed another reminder of you growing up.

This year, you didn’t ask for much for your birthday. You wanted to go bowling, eat pizza, and have a “didna turtles cake.” I’m not a big Teenage Mutant Ninja Turtles fan, but when I was planning to buy you a t-shirt to match the theme, I asked your daddy which turtle you would be. Without missing a beat, he said, “Michelangelo.” Why? Because pizza. Because fun.

7thbirthday5

There is a lot of fun left to be had, sweet William. In a few weeks, we will be embarking on a new adventure and moving into our new home. You’ll not only have a big house and room to call your own, but for the first time, you’ll have your own pool. We have a nice big fence around our yard so you can swim and play and make all the noise you want while you splash with Daddy and me.

Our purpose in life is to keep you safe, healthy, and happy. All we want is to make memories with you and for you to know that you are so loved.

So eat your pizza, my Michelangelo. Have your fun. You deserve it, today and always. Let’s make lucky #7 the best year yet!

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Public to Private.

My husband and I attended public elementary, middle, and high schools, and then graduated from public universities. We work as educators in public school districts and spend our work days regurgitating acronyms and promoting the tenets of public education in the state of Florida.

So, we’re educators. But we’re also parents. Despite a smooth preschool experience and a positive year of kindergarten in public school, my husband and I started to recognize some of the deficits of the public education system when it comes to educating our son, who is diagnosed with autism spectrum disorder and sensory processing disorder.

We enrolled William in a regular standards, self-contained program for students with social behavior communication disabilities for elementary school, knowing that he may eventually need a modified curriculum, and knowing that we would need other options in a few years.

In our county, students in regular standards autism classrooms in elementary school are either mainstreamed for middle school, or they attend social behavior programs with students who are diagnosed with emotional behavioral disorders. As someone who worked extensively with EBD classrooms for two years, I’m aware that there are similarities in behaviors and need, but often there are far more differences between the EBD and the ASD student. I didn’t see either future option as feasible for my son, so my husband and I had already begun researching middle school options. Then, when first grade began and each day, my son came home more and more withdrawn and anxious, we realized we needed other options now.

Not that I would ever wish a devastating storm on anyone, but the impending Hurricane Irma gave me the extra push I needed to pull William from his current setting. I picked him up from school early on September 7, only three miserable weeks after the first day, and I never brought him back.

Resources are hard to find for people with disabilities, plain and simple. We already knew that, as my son’s name sat on wait list upon wait list in the entire Tampa Bay area for nearly three years just for occupational therapy. But as far as schooling goes, hard to find is an understatement. We hit brick wall after brick wall searching for charter, public, and private schools that could possibly offer our son what his IEP indicates that he needs. I spoke to countless principals and directors who told me that my son wouldn’t fit. We considered relocated. Nobody wanted William. He just didn’t fit anywhere among the very small list of possible schools. It was heartbreaking.

Then, on a quick google search, my husband stumbled upon a school that combines half-day academics with half-day one-on-one Applied Behavior Analysis. We called. We emailed. We toured. We budgeted. We signed paperwork. We hoped.

And then we hit another brick wall, one we’re all too familiar with: finances and insurance.

We had already lost a portion of my son’s McKay scholarship (http://www.fldoe.org/schools/school-choice/k-12-scholarship-programs/mckay/) for not using it in August, but on top of that, we faced a deadline of October 2 to get my son enrolled somewhere. So we fought. My husband took it upon himself to contact our insurance company daily to get answers to our copays and out of pocket maximum for the Applied Behavior Analysis portion of our cost.

We still don’t have a solid answer. But on October 2, the deadline for the McKay scholarship, William started school.

Engage

He is in a classroom in a large clinical office with a certified teacher, a trained behavior assistant, and four other children—all girls, which is completely odd for us because most of his classes (and autism in general) have been majority boys. Once the insurance authorization is approved (fingers crossed this will finally happen next week), he will spend three hours of the afternoon one-on-one with a BCBA, learning to modify inappropriate behaviors and replace them with appropriate behaviors, focusing on social skills and increased communication. The office is safe and protected by locks, entry by password only, and video surveillance. The facility offers two sensory rooms with crash pads, trampolines, train tables, slides, and other fun for sensory-seekers like my boy. His teacher, a Disney fanatic just like William, gave me her phone number and email address upon arrival, and sits to talk to me in depth at the end of the day every day. Staff members place a Communication Book inside William’s backpack binder with a detailed home note: subjects he learned, behaviors he exhibited, snacks he ate.

William looks forward to school again. He is happy when I drop him off and when I pick him up, and the relief that my husband and I feel can’t even be quantified. He hugs his teacher goodbye, calls her by name, and unprompted, tells her, “I yuv you.” He can tell when people care. He can tell when he’s safe. They care. He’s safe.

It was a good change.

Confessions of an Autism Mom: I don’t know how to play with my son.

I think something that people rarely recognize when they think of parents raising children who have autism is the profound loneliness that accompanies the disorder. You see, autism spectrum disorder is a general term for “a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication, and repetitive behaviors.”

People expect the flapping arms. They expect the lack of language and eye contact. They expect social awkwardness. But it goes so much deeper than that.

Often, we see these heartwarming videos of children with autism speaking for the first time. We hear stories of teenagers asking friends with special needs to the prom. We try to focus on the charities, the organizations, the good that we see. We think that the struggles come with the “tantrums” and “meltdowns” (two very different things, by the way) and the sensory cravings and aversions. We think that parents are overtired because “autistic kids never sleep” and we think that parents are in a constant state of grief over the parenting experience they thought they would have.

I’m not saying those things aren’t true. Because they are. But right now, they’re not the toughest struggle for me.

My biggest issue, and one I see that is consistently overlooked by those not living this same experience, is that I find myself for days at a time, unable to connect with my son. It has nothing to do with speaking. An infant can communicate by cooing, a toddler can drag his parent over to the cupboard to get out his favorite cookie. That’s communication. That’s connection. That’s one person showing the need for another. That’s one person recognizing another person is there. That’s one person acknowledging another.

And sometimes, for a person with autism, those are the things that go by the wayside.

When my mom, my dad, or my brother, or anyone in Jimmy’s family, walk into my house, William does not always react. He might look up at the sound of the knock on the door, or he might not. He might glance in the direction of the door as someone walks in, he might not. Typically, he is oblivious. Typically, he ignores. He continues stacking blocks or lining up puzzle pieces or reciting Moana lyrics or driving jeeps down the sides of the dining room chairs. He doesn’t say “Hi.” In fact, he is six years old and I’ve never seen him wave. He doesn’t usually address people by name until he is prompted. And even then, it’s like it’s a chore. Because somehow, some way, his brain does not register the merit in greeting people. His brain does not deem social interaction to be necessary and important. These are people he loves. These are people who love him. And he doesn’t even look up.

That’s hard sometimes. When I’m home with him, I try. I take out Legos. I stack blocks next to him. I empty bins of Mr. Potato Head pieces. I print out coloring sheets. I offer to go on walks. I play his favorite music. I teach him new games and repeat, “My turn, your turn” over and over, hoping it sticks.

Honestly? It’s kind of like I’m the desperate girl chasing after the guy who’s just not into me. Know what I mean? I know in my head it’s not true. But in my heart, it often feels that way. That hurts. Because I know he loves me. I know he wants me around. He could ignore me for five hours, but if I grab my purse to head out the door to the gym, all of a sudden he NEEDS to hold my hand. But for those five hours I was right there? Right next to him? Asking him to play? He doesn’t seem to care. Or he doesn’t know how to show he cares. Or to him, presence is enough and interaction is secondary and optional… Probably that one.

I love the book Autism Breakthough because it taught my husband and me to “join” with William. Instead of attempting to break him out of his scripting of television lines and song lyrics or to distract him from stimming, the author of the book encourages parental joining as an integral part of the interaction and connection process. That joining builds rapport. And it does work. When William reaches out his arm (it looks like “Heil Hitler” and makes me totally uncomfortable to mimic in public, but the things we do for our kids, right?) and then pulls it back and quickly flaps his right wrist, Jimmy and I do it with him. He watches us. He smiles. It’s like he’s saying, “You get it. You know how to do it. Let’s do it again together.” When he stacks all the red Legos in one tall, skinny tower and I add one to the pile, he looks at me as if to say, “Thank you.” I didn’t mess up the color pattern. I didn’t knock it over. When he recites the Mickey Mouse Clubhouse theme song or lines from Doc McStuffins, I finish what he starts and sing along. He laughs. Joining works. And it’s nice to have those small moments of connection, even if they’re not the typical, “Hey son, let’s go outside and play catch” and deep conversational moments one would expect to have.

Still, it’s the moments when even joining doesn’t work that get to me. It’s days like yesterday when I try to play in the same room as him—not even with the same toys—and he physically shoves me or yanks me by the arm into another hallway and returns to his space. It’s when he asks me over and over again for the iPad for the 15th time because he would rather stare at a screen than mold playdoh into shapes or play trains with his mommy. It’s when he retreats into what we call “William’s World” and nobody exists but him.

Trains

It’s watching my son pace back and forth in the same spot in the living room while I’m sitting at the kitchen table typing up a blog and thinking to myself, “I don’t know how to play with my son.” Those are the things that make me feel the most lonely, the most different.

Milestones and Autism

Milestones. They matter.

As a new parent, I paid attention to the milestones listed in baby books, like I thought I was supposed to. Roll over? 3 months. Check. Sit up unassisted? 5 months. Check. Crawl? 7 months. Check. Walk? 10 months… or maybe 11? Check. Potty trained? 3 years. Check.

Thing is, milestones look very different once a child is diagnosed with autism spectrum disorder and sensory processing disorder–the two disorders my son was diagnosed with just after his third birthday. Celebratory milestones for a child with autism could include wearing a new clothing item, jumping on a trampoline for the first time, or making eye contact while posing for a picture.

They’re different.

You see, many of the activities and milestones that children learn by observation or seemingly through osmosis, children with autism have to be explicitly taught. And even then, some children with autism may not reach certain milestones. For example, my son never pointed. I would watch babies in their mothers’ arms extend their index fingers and point at lions and tigers at the zoo, and wonder why my toddler, who was so much older than these tiny babies, never pointed at anything. It’s called joint recognition, something I learned later, and connects to the social skills often lacking in people with autism. He had to be taught to point to items. He had to be taught that if he showed me the animal he was looking at, I would look, too, and we could experience that together. He had to be taught to bring me to preferred objects and food that he wanted me to retrieve for him. He didn’t just learn it. Watching us wasn’t enough.

When we moved into our new home nearly four years ago, my husband made sure that all the exits to our home were equipped with locks and childproof doorknob covers. Recognizing that the proximity of William’s to the top of the staircase posed a threat to his safety, my husband removed the bedroom doorknob and turned it around so we could lock it from the outside. (Please, spare the judgment on this one. We have plenty of reasons as well as emergency procedures in place).

Moving on…

I’m not quite sure if it happened one or two years ago (they’re all starting to run together), but William was not feeling well one night. He fell asleep, but at some point in the night, I thought I heard him coughing. I checked the monitor and watched as he rolled over, became quiet, and fell back to sleep. My husband and I decided to go in to check on him. He had vomited at the edge of his bed–perhaps he was attempting to get out of bed?–then rolled back to the top of the bed near his pillows and fell back to sleep. This absolutely shattered my heart, you guys. I couldn’t handle that he didn’t think to call us. He could have been so sick and feverish that he didn’t realize he had vomited… he could have been so tired that he actually decided he didn’t want to be bothered with our help or the inevitable bath we would give him… it didn’t matter. My son couldn’t/wouldn’t/didn’t know how to call my name. He didn’t know how to get help when he needed it.

So we did what we always do. We practiced.

I would stand at the bottom of the stairs and Jimmy and William would stand at the top of the stairs. Jimmy and William would call my name and I would come running. Then we would switch places. We explicitly taught him that if someone was in another room, he could call them for help and they would hear him.

It didn’t seem to work.

Until two Saturdays ago.

Two Saturdays ago, William woke before my husband and me. Typically, on a given weekend morning, he’ll find a book or his iPad and begin to play, make some noise, and we’ll hear him and go to him to say, “Good morning” and start the day. That Saturday, however, he didn’t start playing and we didn’t hear him like we normally do. Instead, he stood at his door and tried the handle. Through our video monitor, I heard the gentle shaking of the doorknob. And then immediately after, I heard a sweet voice call, “Mommy?

He called for me. HE CALLED FOR ME.

It sounds so insignificant even as I type it, but I promise you, this is huge.

I thought it might have been a fluke. A one-time occurrence that I could brag about to my parents and my husband’s parents. Something we could quietly celebrate in our home. Something we would go back to hoping would really stick eventually…

Tonight, I kissed William goodnight like I do every evening, and I went to take a shower and change my clothes. After my shower, I I stood in my room wrapped in a towel, and I heard, “Mommy! I want Mommy!” I ran into his bedroom. He laid in the bed, squinting at the light coming through, and looked at me. I said, “Hi baby, what do you need?” He answered, “I want Mommy.” I told him I would be right back, and after I got dressed, I laid down with him. He was so overtired from a long day at school and therapy, so I did some joint compressions and massages, deep breathing, and singing, to get him to relax. And he fell asleep right on my arm.

SleepingSo while he’s sleeping, I’m celebrating. That’s an autism milestone, friends. William has learned that he can call for me. For his daddy. For a teacher. For another family member. He can use his voice to summon a human being to help. And he understands that someone will come.

You won’t see it written in any cute little baby book decorated with blue ribbons. But it’s an important milestone for The Book of William. And we are so proud.

(Not So) Tiny Prince

Tiny Prince,

Happy 6th birthday, William Thomas! In the blink of an eye, another year flew by and here you are, 44 inches tall, 42 lbs solid, full of life, love, beautiful curls, and long, twiggy legs. In this year as a five-year-old, you faced some changes and challenges mixed with exciting moments and I’m sitting here, reflecting and reliving every little bit.

Highlights:

-Road trip to Myrtle Beach, South Carolina
-Family visits in New York and Pennsylvania
-First train/subway rides
-Kindergarten!
-Learning to read words
-First school bus ride and field trip to Homosassa Springs
-Moving up to Level 6 at Seal Swim School
-Disney, Disney, Disney!
-Being tall enough to ride Expedition Everest at Animal Kingdom for the first time
-Competing in Special Olympics

Current Favorites:

-Pizza
-Kit Kats
-iPad
-Books
-Ed Sheeran’s “Shape of You”
-Trains
-The “row-coater” that KK bought you
-Disney
-Swimming
-Elevators
-Your own face in the mirror J

Words to describe you:

-Happy
-Loud
-Fearless
-Fun(ny)
-Energetic
-Curious
-Loving
-Content
-Confident
-Particular

Things I will never forget:

-The wonder in your eyes looking out the window of the New York train
-You choosing your dinosaur backpack and your first day of school outfit—a blue polo shirt and khaki pants. (You INSISTED on “pants!” even though I told you it would be hot outside.)
-Doc McStuffins holding your hands, looking into your eyes, and crouching to hug you at Hollywood Studios on your fifth birthday.
-Your face watching the “snow” fall during the Frozen Sing-Along at Hollywood Studios.
-Your big, belly laugh when Magical Mickey spoke to you and said, “Cheeeeeese” at Magic Kingdom.
-The sound of you driving the Power Wheels Jeep into the bookshelf on Christmas morning.
-You learning to call “Mommy!” when you need me. Last week, you woke up and couldn’t get out of your bedroom and you called out for me FOR THE FIRST TIME.
-Your first crush—Ms. Kaitlin at Heart 4 Kids, where we took you for an occupational therapy evaluation and you smiled and got stupid shy and closed your eyes and tried to kiss her!
-You demanding that I still push you in the baby swing at the park.
-Your ability to stop and listen to explanations before getting upset. I love you so much for this.

Disney Characters You Met:

Mickey Mouse/Minnie Mouse/Daisy Duck/Donald Duck/Goofy/Doc McStuffins/Jake/Sofia/ Handy Manny/Chip/Dale/Pluto/Aurora/Cinderella/Ariel/Baloo/King Louie/Snow White/ Anna/Elsa/Tinkerbell/Olaf/Woody/Buzz Lightyear/Pooh/Tigger/Piglet/Eeyore/Alice/Mad Hatter/Mary Poppins/Joy/Sadness/Viking/Pocahontas/Peter Pan/Rafiki/Belle/Tiana/ Rapunzel/Elena/Princess Jasmine/Moana/Chewbacca/Kylo Ren/Aladdin/Merida/Mulan

Oh, William, you’ve had so many great moments as a five-year-old! Sure, we’ve struggled a bit with academics and you’ve gone through both teacher and therapist transitions, but I want to focus on all the positive experiences you’ve had!

You’ve become Mr. Independent now that you’re in kindergarten and Ms. Landis pushes you to advocate for yourself. When Abuela brings you to school, you dismiss her by saying “Bye Way-la” when you’re ready to walk with Ms. Morrison to your classroom. When I pick you up, you insist on carrying your belongings, putting your backpack on, and clipping it across your chest. At Disney Springs a couple months ago, your actions demonstrated your independence. You handed your token to the operator, picked your seat on the train ride, and fastened your seatbelt. Part of me feels a twinge of sadness when you don’t need my help, but more of me finds such solace in the fact that you are moving forward and learning to take care of yourself. For the most part, you have learned to get help when you need it and you’ve learned how to put on your shirts, underwear, shorts, and socks! You. Are. Capable!

You’ve learned to communicate in your own unique way when you cannot use words to express yourself. You love to pull our arms places and tell us where to sit. You like to play chase, and ask us to “Stand up” and “sit down” and “I’m gonna get you.” You even take bandaids and put them on your belly or on your teeth to let us know that something is hurting. You had your first loose tooth as a five-year-old… you’re getting to be such a big boy!

For your birthday last year, Daddy and I were able to buy annual passes to Walt Disney World, and I must say, we have made the most of those passes! We’ve stayed at All Star Movie Resort, All Star Music Resort, Art of Animation resort, Caribbean Beach Resort, and the Hilton Buena Vista Palace. You explore the hallways, playgrounds, elevators, and swimming pools at these resorts as if you live there and Daddy and I just adore watching you take everything in. You even like to use the key cards to open the doors to the hotel rooms yourself. We’ve eaten at nearly every character dining experience and you’ve had the opportunity to meet so many of your favorite characters!

JasminePeople refer to Disney as “the most magical place on earth.” I must say, you have made that statement true for your daddy and me.

IMG_9161It has been a joy to experience Magic Kingdom, Epcot, Animal Kingdom, and Hollywood Studios with you! You’ve even gotten to share these experiences with other family members–Tio, Titi, Leli, and Gramps! At Magic Kingdom, you run around in the splash area near Dumbo and you request “Snow White row-coater” over and over again. By far, Snow White Mine Train and Splash Mountain are your absolute favorite rides! You even watch Splash Mountain videos on YouTube at home! You laugh and laugh when we watch the Mickey’s Philharmagic 3D show and when we meet Magic Mickey. Seriously, I don’t think I’ve ever seen you smile or laugh as much as I have when you hear that giant mouse say “Cheese!” Your eyes light up and you stand perfectly still when watching the “fire fires” light up the sky at the end of the night, even when you have to try really hard to stay awake.

 

At Cinderella’s Royal Palace for Valentine’s Day, you met Cinderella, Aurora, Jasmine, Snow White, and Ariel. Each princess said something about your beautiful curls (Jasmine called them “magic carpet curls”), and Cinderella referred to you as “Tiny Prince.” You rode the elevator with her twice—like the king of the castle!

Cinderellas Castle

You’ve also become quite the Harry Potter fan (or “Hippo Popper,” as you like to say). You put these magical movies on and listen to the music in the opening credits so carefully. When you were sick, I was able to get you to watch the first two movies completely and half of the third. Someday, I hope we can sit and read the books together.

Fave1

I love that you’re interested in the characters at Disney and in Harry Potter… magical stories like these remind us that good triumphs over evil, that there’s more to each person than what’s on the surface, and that one person can rise above obstacles to achieve greatness.

Magic: wonderful; exciting; fascinating, captivating, charming, enchanting, spellbinding, magnetic, irresistible

You are magic, William. You brought magic into my life when you were born and you fascinate and captivate and charm and enchant me every single day. You wake smiling, you fall asleep smiling, and I smile because of you.

This year, at 6 years old, I wish you more magic, fun, smiles, laughs. I wish you strength as you face obstacles, and when you’re not strong, Daddy and I will be strong for you and with you.

In closing, I want to leave you with the lyrics of the song you ask me to listen to every day on the way home from school. It’s a beautiful ballad from the soundtrack of Me Before You, one of my favorite books turned film that coincidentally tells the story of a young man named Will. I know the book tells of a tragedy and the story behind the song stems from a child whose parents are facing divorce, but when I hear it, I think of how sometimes, Mommy and Daddy are overwhelmed and don’t know how to make sure you have everything you need, but you always reassure us that all you need is for us to hold you and be with you.

“Unsteady” by X Ambassadors

Momma, come here

Approach, appear

Daddy, I’m alone

Cause this house don’t feel like home

If you love me, don’t let go

If you love me, don’t let go

Hold

Hold on

Hold onto me

Cause I’m a little unsteady

A little unsteady

Mother, I know that you’re tired of being alone

Daddy, I know you’re trying to fight when you feel like flying

But if you love me, don’t let go

If you love me, don’t let go

 Hold

Hold on

Hold on to me

Cause I’m a little unsteady

A little unsteady

I will always hold onto you. I will never let you go. Happy number 6!

❤ Mommy ❤

An Unpaid Actress

I sit alone in my car a lot. In the parking lot at my office, in the visitor spaces at various schools throughout the district, in my driveway and garage, outside the gym both before and after a workout. If I get to work on time, sometimes I still don’t get to work on time because I just sit in my car by myself for a few extra minutes before forcing myself to start the day. Not finishing a song on the radio. Not trolling social media. Not ending a phone call with a friend or family member. Just basking in silence.

I read an article on The Mighty today about living with anxiety, and one line screamed off the computer screen at me: “I’m not faking being sick. I’ve been faking being well.” Damn. Blow my face off with truth. I can relate to that. Because I often feel sick even though I don’t look it. And more often than that, I’m perfecting my acting skills to function in every day life.

Let me tell you a secret. One that might shock you unless you know me really, really well, and even then, you might try to argue to the contrary. Here it is…

I’m an introvert.

Extrovert introvert

Yes, I possess strong opinions. Yes, I can be overly talkative. Yes, I spent eight years standing in front of classrooms teaching students. Yes, I conduct meetings with parents and professionals regularly. And yes, I am introverted. Completely and truly. And this fact, combined with diagnosed generalized anxiety disorder and major depressive disorder, cause me to either pretend or retreat. There’s not much in between.

I never played a sport. That’s actually an understatement. I quit every extracurricular activity that required group participation…ballet and tap dancing, gymnastics, basketball, volleyball… I’m not a joiner. I don’t want pressure or attention. I’m a 30-year-old woman having an anxiety attack because her online graduate course requires one group assignment. But seriously why? Group work is the worst.

I digress…

I hate parties. Hate planning them. Hate hosting them. Hate attending them. Love buying gifts. Love seeing my family and friends. But hate the parties. Hate the lead-up to the parties. The drive there. Did I forget something? How long will this be? Will I see anyone I don’t know/don’t like/who doesn’t like me? Loud music and multiple conversations happening at once and brightly colored decorations and agendas and fireworks and seating arrangements and omg don’t even get me started on games.

I don’t go to concerts or festivals and honestly, I plan every visit to Disney down to the minute so I have fast passes for rides and reservations for dining and I don’t have to stand around because crowds of strangers. So many strangers.

When I’m anxious, I often don’t know where to start. I make to do lists, but can’t prioritize. I wander the bakery of the grocery store and can’t make a choice on what to get. Sometimes, I leave with nothing. I clean my house vigorously in an attempt to get my life under control. My chest hurts. I cry. I feel out of breath. I think about the ugliest worst case scenarios for myself and for those I love and freaking Syrian refugees I’ll never meet and mothers who lived through the Holocaust and that student I had a few years ago who didn’t have running water in his house.

When I’m depressed all I want to do is sleep. Or eat. Or both. I can’t bring myself to tackle my to do list because what does it matter? It seems there’s no point to anything in life. I spiral quickly. Remind myself there’s so much negativity and hurt and pain in the world and I can never fix it.

It is beyond challenging to wake up every day and go to war against your own mind. But that’s mental illness. It’s irrationality and exhaustion and side effects of medication and isolation. It’s seeing the good days as warning signs that very bad days are ahead because you never have too many good days in a row.

Here’s another secret: if you think I’m outspoken, you would be truly aghast at the amount of thoughts I keep to myself. Really. I bite my tongue multiple times daily. I filter myself to spare others’ feelings, to maintain professionalism, and other typical reasons we “think before we speak.” But again, it goes deeper. Some of the things that flash through my mind when I’m at my most anxious or depressed are so horrid that I don’t dare utter them for fear I’ll bring them to life. For fear that others will want to commit me to some sort of institution. So I hold them in. All these detrimental, ugly thoughts. They swirl inside. Among rational, wife-, mother-, work-related “normal” thoughts. They interrupt. They confuse. They feed off each other.

This is life. Introverted. Battling anxiety and depression.

This is sickness that you can’t take a sick day for.

This is real even though so many people shake their heads and say it isn’t and cry drama.

If I was diabetic, I wouldn’t ask you to take insulin with me, but I might ask you to understand if I needed to pause a meeting to check my blood sugar or eat a snack.

Validate me. Validate us.

Because it would feel really good to spend a day as the real me, instead of living as an unpaid actress.

You Can’t Tell Anyone.

“He can’t sit still.”

“He runs out of the classroom.”

“He keeps plugging his ears.”

“He took his shorts off on the playground.”

“He’s licking his shoes.”

“He bites the erasers off the pencils.”

Sigh.

We are extremely fortunate to have enrolled our son is one of the most beautiful schools in Pasco County—not beautiful in appearance, but beautiful in the hearts of the staff members. From the principal to the behavior specialist to the ESE teacher to the instructional assistant to the speech therapist to the occupational therapist to the art teacher and anyone else who encounters my son: they are beautiful. Truly. They communicate with me. They support my son. They go above and beyond in nearly every way possible and on a daily basis, my anxious autism mama heart is immeasurably grateful for them.

William has had a very successful year so far. Despite a few transitions and ups and downs, he has meshed well with the school environment, learned to follow the routines, and is making progress in both reading and math. Writing–I won’t go there. That’s another blog.

Lately, we’ve faced some struggles with William. He’s happy and healthy, but his behavior has been unpredictable, inconsistent, erratic—are there enough synonyms to convey that I have absolutely no idea what the shit he’s doing and why?

Some days, he’s bouncing around like I fed him cat nip. Others, he’s quietly rolling trains and buses and planes up and down chairs and tables and walls and doesn’t want to be bothered with anyone. Some days, he verbalizes and orders people around. Others, he refuses to even use one-word requests and simply throws his arm out or yanks mine out of the socket.

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The biggest challenge to me is the unknowns. The “whys” of what he does. For example, William has been increasingly in need of oral sensory input in the past month. What that means is that because William has sensory processing disorder, he seeks more “input” to his senses than you or I would. So he prefers crunchy foods, loud noises, fast-paced rides, etc. The oral sensory input is the one that kills us, though. Because it’s dangerous. And it’s freaking gross. Like he will pick up a piece of fuzz, the tip of a pencil, an old goldfish stuck in his carseat (don’t act like you don’t have food in your car or we can’t be friends), stickers off fruit or new toys… ANYTHING. And he will put it in his mouth.

We have spent the better part of his five and a half years of life saying, “STOP EATING THAT.” We use pictures. We have given him approved chew toys. We have offered him ice to suck on. We remind him constantly what DOES go in his mouth. Sometimes we will happily go days, weeks, months, with no issues and then BAM—EAT ALL THE THINGS again. And I can’t figure out if it’s seasonal or it’s diet or it’s anxiety at school or it’s that his freaking shoes are tied too tight or he’s going through a growth spurt BECAUSE HE CANNOT TELL ME.

That’s the worst, guys.

He can’t tell me.

Today, I got a phone call from the school letting me know that William pulled his shorts down at recess. His teacher got to him in time so that no other children saw, and most of the kids in his class are pretty much running around doing their thing anyway, but still—he took his clothes off in public. We talk about clothing a lot because William loves to be naked, he loves to be barefoot. And that’s okay. In his bedroom and his bathroom. That’s it. In school, in the car, at the playground, at the mall, etc—you have clothing and shoes on. Period. We reinforce this all the time.

The behavior specialist seemed to think that either William was sensory-seeking (meaning he wanted to feel something against his… ya know) or something was bothering him (underwear, buttons, etc). So tonight, I’m going to have to experiment and see if I can ascertain whether one of those possibilities is correct.

So I sit here asking myself: Is it that his underwear is too loose? Does he prefer boxers or briefs? Is he simply experimenting with himself? Do his shorts feel scratchy? Does he have to urinate but would rather keep playing? Is he just being a rebel without a cause?

Like dude. One big un-answerable question.

When he cries, I don’t know why.

If he’s in pain, I don’t know it.

Imagine that—you’re tired, you’re nauseous, you have a headache, your socks are scrunched up in your shoes, you have something in your eye, you want that color instead of this color, you’re thirsty, you have to pee, you feel sad, someone stole your toy…

And you can’t tell anyone.

That is my son’s life. That is his autism.

And because he can’t tell me, it is MY life and my husband’s life and his teacher’s life and the behavior specialist’s life and every other person who meets him’s life (I’m aware that wasn’t grammatically correct but go with it) to figure it out.

Figure it out. Figure it out.

Sometimes, I can’t. I don’t know how.

But, tonight, I’m determined to figure out why my son is undressing on the damn playground. Because heaven knows I’ll never figure out why he likes to chew crayons.