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 Then, when first grade began and each day, my son came home more and more withdrawn and anxious, we realized we needed other options now.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.

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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 ❤

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.

IMG_8782.JPG

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.

Another One Like Him

So, my best friend recently announced her pregnancy and I’m excited for her. She and I gave birth to our sons just months apart and they’ve grown up together—truth be told, her son is my son’s only friend. Their family is part of our family and I can’t wait to meet the little one they’re adding to the group. However, I couldn’t help but think that the reveal of her second pregnancy would cause our mutual friends to jokingly ask me when it was going to be my turn…

(Spoiler alert: never.)

Anyone who knows me well knows I’m a proud member of the One and Done Club. Strike that—I’m the President, Founder, and CEO. I am madly in love and obsessed with my son, but I know my limitations and for many, many reasons, I have absolutely no desire to have another child. None. Zero. Zilch. In my son’s five and a half years of life, I’ve heard every possible attempt to get me to change my mind—“Only children are weird and spoiled.” Well, my son is already weird and spoiled so… “You HAVE to give your child a sibling so he has a best friend.” Giving my child a sibling does not guarantee him a best friend andplusalso I don’t HAVE to do anything. “But you have SUCH beautiful children.” Child. I have a beautiful child. The next one could be a hot mess… LOL totally kidding… “Don’t you want a daughter?” Last I checked, the whole pregnancy thing was 50/50. Also, I have nieces.  

Anyway, as I predicted, shortly after my best friend made her pregnancy announcement, I had a sarcastic conversation with another friend…

Friend: “So, she’s going for round two. How much shit is gonna head your way wondering the same about you?”

Me: “Most people stopped asking me about having another child after William was diagnosed with autism spectrum disorder and sensory processing disorder. You know, because my hands are full of awful and what if I made another kid JUST like him?”

Friend: “Damn. That sounds harsh out loud.”

Me: “It’s easier if I’m honest about it. Takes away the sting that people think it.”

Because here’s the deal. It’s no secret to me that other parents don’t envy my journey as the mother of a special needs child. I wouldn’t be shocked to hear the thoughts they think, the pity they feel, the misconceptions that cross their minds when they’re in my son’s presence. I can see it on people’s faces. I’ve heard it in well-intentioned yet unfiltered ignorant comments. I’ve seen it written in ballsy Facebook comments to other autism parents–“well, good thing you didn’t have another one.” I’m not blind, deaf, or dumb.

So, let me start with some reasons for my one and done-ness. I hated pregnancy. I threw up every day for nine months (EVERY DAY!), had no energy, and never felt like myself. In addition, for my son to have the best quality of life, we have to dedicate some of our finances to speech therapy. And if I’m being honest, we like to live a lifestyle that allows us to spend money a bit more frivolously than other people—you know, on ridiculously overpriced character brunches at Disney. I’m passed the diaper stage and the potty training stage and the not sleeping stage and have no desire to return to any of them. I think adding another child to our family would complicate things and would limit our funds to fully care for the child we DO have. My husband has career goals. I have educational goals…

These reasons are just the tip of the iceberg. I could truly go on all day about why having a second child right now is not a good fit for us.

And before William was diagnosed with autism, NONE OF MY REASONS WERE VALID. People were all “but but but”…

Then autism happened…

And people grew very, very quiet.

Now? Now I get questions about how likely it is that Jimmy and I would conceive another child with autism. Now I hear the “oh, your hands must be so full” and “I can only imagine” and “I don’t know how you do it” and other patronizing remarks.

William’s developmental pediatrician did tell us that although the research hadn’t been conclusive in years past, there seems to be an agreement among the scientific community that autism contains some genetic component. She alerted us to studies that indicate we could have a 1 in 5 chance of conceiving another child with autism.

But let me make this perfectly clear: I did NOT decide not to have another child because I fear he/she would be like William. Though I do believe in a genetic component to autism and have encountered many families with more than one child with the disorder, and though I do agree that raising a child with special needs who may become an adult with special needs can be challenging, I also believe the following:

IF I did ever get pregnant and IF I did ever have a child with autism spectrum disorder who was anything like William, I WOULD BE THE MOST FORTUNATE MOTHER IN THE WORLD. 

Because William is absolutely, positively beautiful. He is one of a kind. He is smart and funny and quirky and hardworking and I love every single thing that is him. He has lovely blonde curls, mesmerizing brown eyes, and the sweetest little freckle on his upper lip. He hums and sings and smiles and drives his trains and buses up the walls and flaps his arms and chases his shadow and sleeps under the fitted sheet on his bed and counts all the time for no reason and gives me the best hugs and kisses in the entire world. William teaches me to laugh, to celebrate every step forward, to hear what isn’t being said, and to stand up for those who cannot stand up for themselves.

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Another child like him? I would love the hell out of that.

And anyone who can’t recognize that William is a treasure and not a burden by ANY means? Well, in the words of Beyonce: Boy, bye.

My Promise to My Fellow Autism Parents

 

I gave birth to my son just before I turned 25 years old. By that time, nearly every person in my small circle of friends and larger circle of co-workers/Facebook friends I haven’t spoken to face-to-face since high school had already started families of their own. So when my son was diagnosed with autism at three years old and I began delving into research about neurological developmental disorders, I made a connection with the staggering statistics. In 2014, the Center for Disease Control released data identifying 1 in 42 boys on the autism spectrum. 1 in 42.

I didn’t personally know any children like my son at that time. I didn’t know any parents facing the questions and concerns my husband and I faced. We walked a very lonely road for some time. But I did the math. I thought of all the young mothers and fathers I knew and I came to a realization: as they continued to add to their families, another set of parents would find themselves in our position, navigating life with a child on the autism spectrum. As more of my friends announced pregnancies, I secretly wondered who it would be.

In the last two years, two of my friends’ young sons have been diagnosed with autism spectrum disorder. During those same two years, the world of social media and blogging introduced me to even more beautiful families living with autism—shout out to my girl Shannon Feltus and my favorite Instagram follower, Little Aidan. And while I know that people fear the lives we live and hope they won’t fall victim to this “different” fate, I am thankful that because of my openness about my son’s struggles and triumphs, those parents and I have bonded. While outsiders maybe pity us, we are learning, growing, evolving every day because we have no choice but to do so. In a strange way, we’re playing for the same team.

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Recently, one mother text messaged me to discuss some frustrations she’s been facing. I listened and I promised her I always would. Because we need each other. So this is my public promise to any mother or father of a son or daughter with autism spectrum disorder or any other special need:

I promise to let you vent. I promise that when you feel guilty, I will tell you that it’s not your fault. I promise that when you feel angry, I will listen to your screams. I promise that when you feel defeated, I will remind you of how far you’ve already come. I promise that when other people walk out of your life, I will still be here. I promise to ask about your child. I promise to ask about you. I promise to tell you to delete those “your child this week” emails. I promise that I will root you on and celebrate every milestone and every bit of progress you and your child make because each step forward matters. You hear me? It matters. I promise to cry with you and to validate your feelings when you’re sad and asking why. I promise to tell you it’s okay not to go to that one birthday party or get-together because you’re overwhelmed and afraid people will stare at your child. Or if you want to go, I promise to give you a pep talk as you’re getting ready and to encourage you to give them something to talk about once you get there. I promise to laugh when your child does something strange that no one else understands. I promise to love your child and his/her quirks. I promise to support you as you end unhealthy friendships, leave unsupportive family members behind, and let bridges burn. I promise to share resources.

And quite possibly most importantly? I promise to slap a bitch if she tells you that vaccines caused your child’s autism.

We’re in this together. I promise.