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.

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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.

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.

meme

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.

Not the End.

I remember it like it was yesterday, but I couldn’t tell you the specific day or time. It was 2014. I know it was in the evening and I’m pretty sure it was November. October had been a particularly difficult month for me emotionally, not because of any particularly tragic events but because my depression and anxiety so far outweighed my ability to think logically and rationally. I was in a dark place. And no matter what I did, what I told myself, what I read, who I surrounded myself with, what I ate, how much I slept or exercised, I couldn’t pull myself out of it. I fell deeper and deeper and deeper.

This night that I remember so vividly, I got in my car and drove and drove and drove in the dark. I wondered what it would be like if I pulled over somewhere in a ditch and just slept and slept. When would someone find me? Would I even want to be found? I wondered what it would be like to live somewhere with snow and ice and found comfort in the thought that if I fell asleep in my car in the snow there was a chance I might not wake up.

I didn’t want to live.

 And so I came up with a plan.

Before that night, I don’t think I had ever truly contemplated ending my own life. I don’t think I had really meant it if the thought crossed my mind. But that night, I meant it. I strongly considered it. I decided I could no longer face the mounting depression—constant heaviness and apathy—and anxiety—persistent fear and dread—that permeated my life. So I made a plan.

Every time I’ve read an article regarding a suicide or spoken to someone about a suicide attempt, I’ve encountered the same recurring word: Selfish. What a selfish decision. What a selfish thing to do. I can’t believe someone could be so selfish. He took the easy way out. She gave up. 

Let me tell you from experience: my suicidal thoughts were far from selfish.

I cried thinking of my three-year-old son and hoped he wouldn’t even know what he lost. I cried thinking of my husband and the responsibilities I would leave him with after we devoted so much of our lives to each other. I cried imagining my parents feeling at fault—how could I do that to them after everything they did for me my entire life? I cried wondering if I had spent enough time with my brother and mulled over the milestones in his life that I would most likely miss. I cried picturing my students, knowing that this decision would send them a heartbreaking message and cause them to feel abandoned, some of them yet again. My mind raced with lists of names of people I should leave a note for. Anyone I loved or remotely cared for, anyone who commented on my pictures on Facebook or worked with me in any capacity deserved some correspondence—some clarity—so they wouldn’t have to feel guilty or responsible or like they could’ve done something to prevent this, I thought to myself. I don’t want them to hurt. I don’t want them to think they are to blame. 

That’s what I was thinking while simultaneously thinking that I could not possibly survive another day. Empty. Alone. Hopeless. Black. Sad. Guilty.

I stopped driving. I closed my tear-filled eyes in a Target parking lot and envisioned my plan: diving headfirst off the Sunshine Skyway Bridge in the wintry weather. Or maybe I would simply lean forward, stand on my tiptoes, and free fall like a bungee jumper. It would be peaceful, freeing. The air outside was so cool and crisp that night that I thought maybe, just maybe, I could take one deep breath before I hit the water—the deep breath I hadn’t been able to achieve for months and months. It would be quick, right? They say that hitting water at that speed from that height is like clashing into glass. I would wait until there were very few or no other cars crossing the bridge. I wouldn’t want anyone traumatized by what I was about to do. I would die instantly. All my worries and sorrows and numbness and darkness would disappear. All the ways I’ve failed everyone else would melt away and be forgotten, just like me. Someone else would step into the roles I played. And the world would carry on. It always does.

I had purposely placed my phone on silent. I had vowed not to answer anyone, not read my husband’s text messages asking where I was or what I was doing. It was better this way, I told myself. 

But I did it. Sitting in that Target parking lot, I thought of my husband and my innocent son sitting at home. I read a text and I answered it. I text my husband. And I think that’s the only reason why I didn’t follow through with my plan that night. That and the fact that I hadn’t written all the letters I knew I wanted to write. I was desperate. I was ready to leave this earth. But I hadn’t written the letters. 

And I text him. 

And after I text him, and after sitting some more in the dark parking lot with my head on the steering wheel, I decided it couldn’t be tonight. It wouldn’t be tonight. I wanted to kiss my son. I had things left to do and say.

I didn’t drive to the Sunshine Skyway Bridge. I never made it there.

I turned around and I drove home. 

My hopelessness didn’t leave me. My madness and sadness and desperation didn’t get better right away. And it took over a month—on New Year’s Eve actually, as I remember that conversation across a dinner table at a crowded restaurant so clearly—for me to tell my husband what I actually had felt and planned that night. Even then, I had a hard time getting the words out. Because it’s embarrassing. It’s disgusting. It’s shameful. It’s scary. 

It took eight more months before I saw a doctor, asked for help, and finally decided to take the medication he prescribed me. 

I wanted to end my life. Truly wanted to. The leap off the bridge and the crash into the cold water appealed to me far more than continuing daily life. 

I wanted to end my life. But I didn’t.

I didn’t.


According to Project Semicolon, “A semicolon is used when an author could’ve ended a sentence but chose not to. You are the author and the sentence is your life.”

Visit their website. Reach out for help. It’s not the end. ❤️