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.

dsc_0257

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. ❤️

A Steering Wheel and a Rearview Mirror

 

I’m not a morning person. I never have been. My husband finally decided last week to stop saying “Good morning” when I shuffle into the bathroom to brush my teeth next to him, because I can only muster a grunt and a side-eye in return. Mornings are tough. I feel productive at night so I often stay up reading or social networking or watching Netflix or preparing for work the next day or folding laundry or eating cereal—mostly eating cereal. Last night, I think I finally got into bed and set my alarm at around 1:45 a.m. Usually, I can handle 4 hours sleep. By the time I shower and get dressed in the morning, I’m awake enough—without coffee, because I don’t drink coffee—to get my day started. I’m still not happy about having to be out of the house by 7:15-7:30, but I deal. I get to work, I make my to-do list, and I get moving with my emails and lessons and meetings and paperwork.

But then sometimes, while I sleep, my lifelong companions, Depression and Anxiety, come snuggle into bed next to me. When they haven’t come to visit for a while, I feel even more robbed when they do. I wake up feeling violated. Intruded upon. I didn’t expect them. I wasn’t ready. I let my guard down.

And they came unannounced like they always do.

I wake with a headache. With pains in my chest. I can’t get a deep breath no matter how many times I inhale or force myself to yawn. I wake with sad thoughts. Hopeless thoughts. Fearful thoughts. Overwhelmed thoughts. Stressful thoughts.

I struggle through my morning routine, distracting myself by making sure my outfit matches and my hair looks good.

And I then while I drive to work, I think about all the things I haven’t accomplished yet. Music plays and deejays yammer on and on, but at each turn, at each red light, my mind races. I think about all the ways I’ve failed my family and my son. All the ways I’m spinning my wheels and not actually helping anyone in my new job. All the possible negative outcomes of future events. All the ways I could’ve better handled past events.

Family members dying. My son struggling in school. Car accidents. Plane crashes. Suffocation. Suicide. World hunger. Homelessness. Needy students. Mental illness—not my own, but that of others, because obviously they’re more important. My friends getting divorced. The medication I take that seems to work so well and then all of a sudden, it doesn’t. The very few sick days I have accrued and how I should never take them for such selfish reasons because who’s going to believe I’m sick when I don’t look sick? I don’t look sick. I don’t sound sick. But I feel sick. And I’m thinking about all these horrid things that I only realized in the last few years most people don’t think about on a daily basis.

This is all before 8:00 in the morning.

And so I pull into a parking lot and I sit in my car because I have to compose myself. I’m honest to a fault, so it’s hard for me to be an actor when so many days like these plague my year. But I’ve learned over time. I’ve learned to suck it up for the sake of my students and for the sake of my coworkers and for the sake of my husband and son. Because who can just crumple into a ball and stay under the covers when there’s work to be done and people to help?

So I sit in my car.

If I had a dollar for every time I’ve sat in a school parking lot, or a gym parking lot, or a store parking lot, or even in my own driveway before taking a deep breath and walking into my own home, I would be worth more than Michael Phelps and his 22 gold medals (as of today, obv).

I sit in my car and I text my husband: “It’s a bad day.” Because I’ve learned to call it like it is. There’s no point in pretending. I’ll go weeks managing the presence of Depression and Anxiety and feeling almost normal, but then the universe throws me a bad day. So I acknowledge it. At least someone knows.

And I sit in my car. My steering wheel has listened to its share of my sobs, my rearview mirror has seen plenty streaks of runny mascara. It’s not the first time and it won’t be the last.

But there’s work to be done. There are emails to write. There are people to support. My lists await…

IMG_5050

So if They won’t stay in the car, I’ll bring my companions with me. And I’ll tell Them to be quiet while I sit in meetings and work with teachers and smile. I’ll tell Them to be quiet while I type documents and send emails. I’ll tell Them to be quiet until we’re alone. I’ll hope nobody notices and I hide Them well. I’ll use all the energy I can muster to make it until 3:30, and then the steering wheel and the rearview mirror will be my listening ears and watching eyes yet again as I drive to pick up my son. When I get to my mother-in-law’s house, I’ll probably sit in her driveway. Compose myself. And then I’ll walk to the door, ring the bell, hug my sweet sweet son, and the process will continue.

And I will hope that tonight while I sleep, They decide to sleep somewhere else.

Parenthood: The Reality

Subtitle: That Time I Dissed the Show You Love

Parenthood

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

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

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

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

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

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

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

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

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

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

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

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

Because It’s All Good: Will Turns 5!

William Thomas,

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

DSC_4215.jpg

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

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

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

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

IMG_7415

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

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

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

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

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

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

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

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

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

IMG_7373

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

DSC_4186

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

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

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

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

And you are mine.

DSC_4238.jpg

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

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

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

Look into my eyes, you will see

What you mean to me

Search your heart, search your soul

And when you find me there

You’ll search no more

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

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

You know it’s true

Everything I do, I do it for you

Look into your heart, you will find

There’s nothin’ there to hide

Take me as I am, take my life

I would give it all, I would sacrifice

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

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

You know it’s true

Everything I do, I do it for you

There’s no love, like your love

And no other could give more love

There’s nowhere, unless you’re there

All the time, all the way

You know it’s true

Everything I do…

I do it for you.

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

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

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

Happy happy birthday!

Love,

Hi Baby (Mommy)

To Be Happy

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

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

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

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

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

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

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

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

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

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

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

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

Grass 2.jpg

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

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

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