On Being Something Else

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

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

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

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

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

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

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

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

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

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

I need to be a full, healthy person.

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

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

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

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

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

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

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

Four, Wild, and Free

My William,

Somehow, I have a four-year-old son. Four. Years. Old. Sometimes, I can’t even believe it. It seems like overnight you grew from the mushy infant who loved to snuggle or the grinning toddler who loved to be tickled into this long-legged boy who loves to run and jump and play. You are not a baby anymore. It happened before I was ready for it, but you are no longer a baby. You are a boy. A boy who uses the bathroom independently. A boy who climbs chairs to reach the cookies and chips. A boy who asks for lollipops and ice and “canny” (Hershey’s kisses). A boy who tells me what’s on the pages of books and finishes puzzles and plays games. A boy who identifies letters and colors and numbers—something I was never sure I would hear you do, but always believed you could. A boy who masters technology, swiping games and finding videos on YouTube—Clair de Lune, Little Einsteins, Blank Space, and Uptown Funk are your current favorites, mixed in with some “Part of Your World” from The Little Mermaid and “Let it Go” from Frozen. Man, do you love Frozen. A boy who can smile and comply, or kick, protest, and refuse with sudden anger. A boy who does “clean up time” so obediently. A boy who wraps himself in a burrito of blankets or grips my arm for dear life to fall asleep. A boy who bends over as soon as he walks in the door, always standing, to take off his shoes and socks, even though we’ve told you sitting down would be so much easier. A boy who rolls his sleeves up to wash his hands—your daddy makes fun of me, but for some reason, I find this little skill the most adorable and the most adult of all the things you do.

I’ve never seen time go by as quickly as these last four years have. When I think about the years of your life, I can characterize each of them by describing the changes in your personality and behavior over time. As this birthday approached, I began searching for an adequate word to encompass the miniature person you have become in the last year. I’m not going to lie. I didn’t always love age 3. So when I tried to describe you—the many sides of you we have seen since your last birthday—in one word, the word came to me quickly. And it has stuck with me. William, my love, my four-year-old little man, you are wild. 

You were wild once. Don’t let them tame you. –Isadora Duncan

Like your crazy blonde curls that we adore so much pointing every which way when you wake up in the morning, you are wildly moving. You are everywhere at all times. You are the Tasmanian Devil, spinning round and round and round. You are fast and you are fearless and you are so very hard to catch.

“A question that sometimes drives me hazy: am I or are the others crazy?” –Albert Einstein

Like a feral cat who cannot and will not be tamed, you choose to march to the beat of your own drum—a drum those around you may not be privileged enough to hear, and you don’t care—and to ignore the “normal” and the “typical” and the “usual” and the “mundane.” You twirl when others walk in a straight line, you stand when others sit, you zig when others zag. Wild and crazy and free.

“He was unheeded, happy, and near to the wild heart of life. He was alone and young and wilful and wildhearted, alone amid a waste of wild air and brackish waters and the seaharvest of shells and tangle and veiled grey sunlight. ― Jon Krakauer, Into the Wild

Like a botanist studying the origins and effects of plant life, you choose to spend your time weaving in and out of the wild: chipping bark off trees, kicking fall leaves (in February and March, obviously—it is Florida, after all), tugging on the “gree grass!” and holding it in your too-big-for-a-four-year-old hands (you get those from your Gramps, by the way), throwing sticks into lakes, watching birds fly in the sky and lizards scurry across the sidewalk.

Wild.

I think that when a mother names a child, she can set in motion a trend, a chain of events; she either brightens that child or dooms that child with the inevitable associations members of society hear with the utterance of that name. After months of disagreements, after no other name fit, we named you William. And after one of my favorite movie characters of all time, we called you Will. Now, so often, the words that seem to encompass who you are and who you are becoming attach to the name Will perfectly, like the puzzle pieces used to signify the Autism Spectrum Disorder you’ve claimed as a part of who you are this last year. Will. Weird and wild. Warm and wandering. Will.

In addition to the alliterative matches to your name, the definition fits. will: (noun) determination, willpower, strength of character, resolution, single-mindedness, drive, tenacity, staying power. What were we thinking? Your daddy and I named you Will. And you certainly have an iron will. You are both physically and mentally strong, and if I’ve learned anything from three-year-old to prepare me for four-year-old Will, it’s that if you don’t want to do something, there is nothing in this world—not even a lollipop or “canny”—that can make you do it.

Oddly enough, it never crossed my mind that your Daddy and I planned to have a child born under the same astrological sign as me. When we decided to have a family, we thought it would take some time. We thought we would have a summer baby. But there you were at the end of April, due near your mommy’s birthday. You are a Taurus. You are a bull. Just like me. I guess that’s why it seems that in this last year, while you’re playing with and smiling at everyone else, you’re giving me the stink eye or butting me in the head or pinching me. We are alike, you and I, deep down inside. AutismPic6 But on this fourth birthday, I want you to know that you, my child, are so much more than I am. Because you own being different. You own your individuality and wear it proudly as a badge for all to see, a prized medal of achievement, and you are often oblivious to the expectations of those around you. For that, I both admire you and thank you. I am fortunate to have someone in my life, someone so close to my heart, to force me to recognize what is actually important and to force me out of the box of complacency I’ve lived inside of for so very long.

For me, words were everything. The typed word, the spoken word, the sung lyric. They were everything. Until they weren’t. Until you didn’t use them. Until I had to learn your words without words. Thank you for teaching me to listen to what people are not saying. And thank you for trying your hardest this year to learn new words and talk to me and your family and friends and teachers.

For me, normalcy was everything. Dressing normal, acting normal, behaving, doing what was right by everyone else’s standards, pleasing people. Until there was no normal. Until I was told you weren’t “normal.” Until I learned that what’s normal for me and what’s normal for someone else—honestly, can we just call it all normal? We just have a different normal. And if you’re not normal, then I certainly don’t want normal. Because everything that I want and everything I believe in, is in you.

For me, structure was everything. Shoes and clothing and piles of paper had their places. Books and DVDs stood alphabetized in their shelves. My life had to be planned out ten years in advance—a degree at this age, a marriage at this age, a child at this age… Until it couldn’t be. Until they weren’t. Until tiny hands showed me that for some strange reason, that DVD goes over there, that toy fits best under the coffee table, that bus belongs driving down the side of the trampoline instead of on the roads painted on train table, that game can only be played while balancing upside down on the swivel rocking chair. Life? Well, life just happens sometimes.

You are 100% your own, William. As a three-year-old, you’ve made strides forward in learning to follow routines, in learning to comply with rules in a classroom setting. You’ve tamed slightly. You can sit and attend to a task, you can identify nouns and verbs in picture books at speech. You can watch me write letters on your magnadoodle and read me what they say. You can snuggle me with me and watch a show for five minutes—then get up and stand precariously close to the television. You can use 3-4 word phrases to request what you want—because you always want something. I want you to know that I’m so proud of you and I will continue to support you as you meet more goals, learn new lessons, and progress. But even though you’ve made those strides, even though you’ve let school calm you and teach you more socially appropriate behavior, you are still my wild child. And I believe in my heart that you always will be.

This year, as we absorbed your diagnosis and organized family and friends to join the 2015 Walk for Autism Speaks in your honor, your KK asked me to listen to a new song, “Masterpiece” by Jessie J. The lyrics say:

So much pressure Why so loud?
If you don’t like my sound You can turn it down
I got a road
And I walk it alone
Uphill battle I look good when I climb
I’m ferocious, precocious I get braggadocios
I’m not gonna stop
I like the view from the top (Yeah)
You talk that blah blah, that la la, that rah rah shit
And I’m so done, I’m so over it
Sometimes I mess up, I fuck up, I hit and miss
But I’m okay, I’m cool with it 
I still fall on my face sometimes
And I can’t colour inside the lines
‘Cause I’m perfectly incomplete
I’m still working on my masterpiece
And I, I wanna hang with the greats
Got a way to go, but it’s worth the wait
No, you haven’t seen the best of me
I’m still working on my masterpiece

AutismPic1 Every time I hear this song, tears well up in my eyes because I picture you and your strong spirit. You’re ferocious and precocious. You mess up and you’re okay with it. I know we haven’t seen the best of you and I can’t wait to see your masterpiece.

Please remember: your successes are my successes. Your struggles and frustrations are my struggles and frustrations. I’m with you.

So happy fourth birthday, my sweet and stubborn William. This year and every year, my wishes for you–like the book I Wish You More that you got as a birthday present–are boundless, endless, limitless, and unable to be put into words. But for now, what I wish most for you is that you continue to be you. That you continue to figure things out your way in your time.

Don’t let anyone take your wild away, Will.

All good things are wild and free. And some people aren’t meant to fit in a box.

Paradox

paradox-noun-the paradox of war is that you have to kill people in order to stop people from killing each other: contradiction, contradiction in terms, self-contradiction, inconsistency, incongruity; oxymoron; conflict, anomaly; enigma, puzzle, mystery, conundrum.

I try not to write blog posts immediately after emotional events occur, because then the word usage is harsher and more painful. The situation is still raw. Often times, I sit in my car or at the top of the stairs in my house after experiencing something traumatic, texting my thoughts to myself, blinking away tears, and angrily typing as fast as I can. Then I delete. Or I amend. Because I can’t say that on the Internet. I can’t admit that. I can’t text anyone that. I can’t swear or disappoint or offend.

But honestly? It gets exhausting.

It wears me out to delete and amend and reword my feelings. It is taxing and physically draining to pretend, to paste a phony smile on my face while I walk up and down the aisles of Target in my sunglasses, to breathe in through my nose and out through my mouth, grit my teeth and continue robotically through the day, pushing my anxiety into the pit of my stomach as if nothing happened. As if nothing is happening.

I’m going to say it because it just needs to be said: Some days, I just fucking hate autism.

There. I said it.

Don’t like my language? Unfriend/unfollow me or simply exit the screen. All it takes is one click in the top corner and you can go on about your day. I’m not going to be sorry anymore for how I feel or who I am or what I have to say. My only outlets are running for miles, eating junk food, and type-type-typing away at my phone or computer when I have three minutes to myself. I’m trying desperately NOT to do one of those three, and even after running over 80 miles so far this month, my mind is racing with thoughts. So here I am. And some things just feel like they require one expletive.

This post probably isn’t going to be pretty. It’s not going to end with that satisfying “aha” moment or a quote from a famous person—not that I’m saying I’m ever super philosophical or leave any readers breathless with my words.

If you read my initial post regarding my son’s diagnosis of Autism Spectrum Disorder and Sensory Integration Disorder, you know that I see possibilities when it comes to my son. I welcome his quirks. I embrace therapy sessions. I believe in him and support any progress he makes. If you read my next post about people’s reactions, you know that I don’t want pity. I don’t want people to say I’m sorry. Because it accomplishes nothing. There’s nothing you can do to change my son’s diagnosis. There’s nothing I can do to change it. Knowing that you’re sad for me doesn’t help or support or strengthen me. In fact, it ends up making me feel worse.

Both of those posts generally came out with an optimistic tone. A tone of acceptance and tolerance and deep within me, I do still feel optimistic. Most of the time.

Two weeks ago was not one of those times.

So far, being an autism parent has been the ultimate paradox for me. A mystery. A conundrum. A contradiction. A conflict. It’s a mix of: Yes, of course I care where autism originates. Of course I want to know what causes it, because then maybe either preventative measures can be taken or treatment and support can be improved for the thousands affected. But wait. No, I don’t want to know because why does it matter? And what if it’s something I did? And why should my son need to be fixed? I mean, then I’m admitting something’s wrong with him. He’s not wrong. He’s just different. Right?

It’s a mix of: Yes, of course being involved with all these special needs parent support groups that people invite me to join online is beneficial and encouraging. But on the other hand, some days, the posts there are downright discouraging and depressing and I just want to talk to someone who hasn’t faced her own personal hell that day.

My life—and more importantly, my son’s life—is a veritable mix of yeses and nos, rights and wrongs, dos and don’ts, cans and cannots. And my head just spins and spins and I somehow have to continue teaching, continue driving my son to appointments, continue parenting, continue cleaning and cooking and taking care of husband/dog/house, when all the while I feel like Kate Winslet in Titanic, standing in a crowded room screaming at the top of my lungs and nobody even looks up.

Two weeks ago, I took my son from school to his speech therapy appointment. The same time and place every Tuesday for the last 13 months. For some reason, he wasn’t having it. He started protesting and kicking in the waiting room. “Remember, William, we use gentle hands and feet.” “I want water. I want outside.” “William, we can go outside and see the water AFTER you play with Ms. Maria. Don’t you want to play with Ms. Maria?” ::kick:: ::hit:: “No!” So Ms. Maria came out to get him, and we both could tell it was one of those days when I would need to accompany him into the room. This has only happened three times total thankfully, and even when it does, usually he settles, completes his 30-minute session, and we move onto what he really wants to do: run back and forth in the grass behind the office, throw twigs into the lake, and pick leaves off the trees.

That day, I had the worst public parenting experience I’ve ever had. In front of a professional, I pretty much had to wrestle my child into a corner because he was so aggressively hitting and kicking, swinging over and over again no matter the tone of my voice, no matter the words coming out of my mouth, no matter my facial expressions, no matter my attempts to distract and deter and redirect.

I had to pin down his legs, I had to hold his arms, and still, as his limbs and face turned red, he struggled to hurt me. To hurt me. Because he does hurt me. Did any of you know that? He hurts me. He doesn’t mean to hurt me. I truly believe his intent isn’t to harm. But it happens. It happens to me. It happens to my husband. It happens to my son’s teachers.

“William, you need to calm down. Take deep breaths in and out, like this,” I said, and I breathed in through my nose, out through my mouth, the way I’m always doing to keep my own stress buried. “We use gentle hands and feet. We don’t hit and kick because then we hurt people. You hitting and kicking makes Mommy sad. Look, gentle hands,” and I took his hand and tried to rub my face. He clawed and pinched instead. Thankfully, he’s a nail biter. No harm done. Small favors, right?

Then, guys? Then he just cried. Miserably, loudly, full on tears streaming down his face. And me, in a skirt and heels, all professional and put-together, crumpled on the floor in front of a 35-lb toddler, sweating while restraining him and looking into his frustrated eyes, trying not to cry myself in front of this woman who must think we’re both crazy.

He had a good day at school. He slept well the night before. I put calming essential oils on him. I promised him a trip outside and a lollipop if he would just sit calmly and participate in speech. I was trying to do everything right. And it didn’t matter. The poor thing.

“Why are you sad?” I asked, still holding him.
“Sad,” he said. He can’t tell me why.
“I know you don’t want to be here,” I said. “I know you want to be outside. But FIRST (I have to emphasize, as he learns time), we play with Ms. Maria. She has a dollhouse and some toys for you. We have to learn and use words, and THEN we can go outside. It’s a few minutes. I’m sorry you’re sad.”

He kept crying. I was still holding his arms. And then I had a thought. I loosened my grip and helped him to stand.

“Look at me,” I said. And he did. “Do you want to sing?”
“Sing,” he answered.
“Can you make a…” I started.
He sang, “Happy face, happy face, jack-o-lantern. Can you make a sad face, creepy face, jack-o-lantern.”

Ms. Maria and I clapped. “How about twinkle twinkle?” I asked.
“Twinkle twinkle, little star…” he sang. And he smiled. And he breathed. And he sang.

Those moments of relief really mean the world to me. Not even because I’m relieved. But because I can see his relief.

We salvaged about ten minutes of his speech session.

But, at the risk of sounding dramatic, I think I had already died a little inside.

The amount of physical effort, the emotional up and down and up again, the weight of someone’s eyes and ears on me during this meltdown, this argument, this difficult moment, whatever you want to call it, just… I don’t know. Sometimes I feel like the English language is seriously inadequate. It’s like a piece of me cracks off every time I have to witness my son hurting himself, hurting others, breaking down.

Because here’s the thing. A lot of you have probably carried screaming children out of stores, felt the eyes of others on you in public as you figured out how to discipline your child. A lot of you have dealt with hitting or kicking or biting. You’re sitting there reading this like, “Quit being so dramatic. Every parent has dealt with the terrible twos or the three-teens. Every parent has had to carry a kid kicking or screaming—stop acting like this is a big deal.”

Maybe you’re not thinking that. But if you are, chew on this: at some point, hopefully, your neurotypical child—like that? I get to use big words now that I’m an autism parent. On the support group pages we even use acronyms like NT! So much fun. Only not.—eventually learns to rationalize. Hopefully your child can understand, “30 minutes of speech and then you get a lollipop and to go to the park!”

My child doesn’t process language the way he should at his age. His receptive and expression language skills lag behind, and so he struggles to communicate. He can’t say, “I don’t want to do this right now” so instead, with hot tears streaming down his face, he kicks me, or his teacher, or his speech therapist, or his father, or the kid who took his toy away and he can’t ask for it back because words never ever come to him the way he wants them to.

In addition to that, there are direct correlations between physical strength and autism spectrum disorder. Every professional, every family member, every friend who William comes in contact with inevitably makes the same observation: “He’s so strong.” And inside, I’m like, yeah, no kidding. He is incredibly strong. And it’s scary. Because right now I’m bigger. Right now I’m stronger… mostly. But a year from now? Two years from now?

So yes, I love my son’s quirks. Sometimes. I love that he pushes his face so hard against my face on a daily basis because of his sensory needs and that he is active and loves to climb and play. I love that he counts and sings songs over and over again because his voice is the absolute most beautiful sound in the world to me. I love that there are some things about him that only his father and I know about. I love that he turns upside down every time Olaf comes on the screen upside down while he watches Frozen. There are so many aspects of him that I love. Even the things that are hard to love, I love. He’s my baby.

But no, I don’t love that he struggles. I don’t love that he’s different in a society of same. That while your child plays tag with another child on the playground, mine doesn’t understand how to interact with other people and instead, runs away from your child. Wanders. Throws mulch. Stares at signs, backs away, and stares at signs, backs away. Walks up the steps and down the steps the same way over and over and over because his autistic brain is so repetitive. That while your child can tell you that another kid hit him at school or tell you what he did today at school, mine can’t.

I don’t love that sometimes I feel like I’m losing him. Like sometimes, he’s so far away.

And then, when I let my feelings sit saved and unheard on Microsoft Word for days at a time, I get small gifts that remind me to breathe in, breathe out, to sing “Twinkle Twinkle Little Star,” and give myself a break.

My gift for the last two weeks, nearly every night, was a little boy holding onto my arm when I tried to put him in bed. He wants me to lay next to him while he falls asleep, still clinging to my arm.

Sleep

I guess I’m really not losing him at all. He’s there.

Somehow, somewhere, some way, he’s in there.

I’m Sorry.

sorry

adjective

1 I was sorry to hear about his accident: sad, unhappy, sorrowful, distressed, upset, downcast, downhearted, disheartened, despondent; heartbroken, inconsolable, grief-stricken. ANTONYMS glad.

2 he felt sorry for her: full of pity, sympathetic, compassionate, moved, consoling, empathetic, concerned. ANTONYMS unsympathetic.

3 I’m sorry if I was brusque: regretful, remorseful, contrite, repentant, rueful, penitent, apologetic, abject, guilty, ashamed, sheepish, shamefaced. ANTONYMS unrepentant.

4 he looks a sorry sight: pitiful, pitiable, heart-rending, distressing; unfortunate, unhappy, wretched, unlucky, shameful, regrettable, awful.

exclamation

“Hey, that’s my foot!” “Sorry!”: apologies, excuse me, pardon me, forgive me, my mistake; informal my bad.

“I’m sorry.” When said genuinely, this phrase can reconcile friends, family members, or lovers. When said genuinely, this phrase can heal wounds, create forgiveness, resurrect burnt bridges, express sympathy or empathy. When said genuinely, this phrase can mean, “I feel for you” or “I wish I hadn’t done that” or “I’ll never do that again.”

Though I’ve received quite a bit of support and encouragement since my announcement that my son was diagnosed with Autism Spectrum Disorder, I’ve also encountered both ignorant and patronizing responses, all of which I wish I could un-hear, un-read, un-see.

One of these sentiments is: “I’m sorry.”

I know people mean well. I know the intent to show care and compassion. But I’m sorry means that you wish my life was different than it is now. I’m sorry means that you regret my situation and wouldn’t want it for yourself. I’m sorry means you are “heartbroken” for me or “full of pity” for me. And you know what? I’m not sorry. 

I’m not sorry that my son is walking, jumping, singing, playing, throwing, and kissing me goodnight.

I’m not sorry he’s breathing deeply and sleeping sweetly, peacefully through the night in the most angelic positions under a sheet with no pants on–because three years old means always wanting to be naked apparently.

I’m not sorry that I see his father when I look in his brown eyes or that when he leans my face against mine to look in the mirror, our chins and skin tones are shockingly identical.

I’m not sorry that he spins around, that he makes Tarzan noises, that he likes to pick up every leaf and every acorn when we walk, that he stacks blocks and knocks them down, stacks blocks and knocks them down, stacks blocks and knocks them down.

I’m not sorry that he has a warm home, a dog to play with, food on the table. I’m not sorry that eats and digests everything with no problem or that he uses the bathroom completely independently.

I’m not sorry that he uses crayons and markers and glue or that he plays with trains and musical instruments at school.

I’m not sorry that my husband and I can take him to the beach and watch the wonder and excitement on his little face as the wind blows through his hair, as he digs his toes in the sand, as he walks into the water.

IMG_0520

Photo courtesy of Amanda Ashley Photography

I’m not sorry that he hugs his Mickey Mouse or his Rudolph or that he asks me for a specific movie we’ve already watched over and over again, and then climbs up on the couch next to me–or even better, in my lap–to watch it.

I’m not sorry that he has advocates, support, living grandparents who are involved in his daily life, cousins, aunts, uncles.

I’m not sorry that having autism means he has to try harder to achieve goals.  Because the trying harder will make the success that much sweeter.

I get that you’re sorry. I get that you mean well.

But I’m not sorry. So, honestly, you don’t need to be either.

She Sees Possibilities.

“The moment a child is born, the mother is also born. She never existed before. The woman existed, but the mother, never. A mother is something absolutely new.”
-Rajneesh

On April 23, 2011, I became a mother. Even saying that nearly four years later sometimes sounds strange to me, since it seems like only yesterday I was a 17-year-old girl dating my some-day husband and agonizing over declaring a college major. But it’s true. I am a mother.

“And she loved a little boy…”
–The Giving Tree

 I was never ashamed of the fact that I didn’t feel that unspeakable love, that warm gooey feeling for my son while he was in the womb. But when I met him? When I heard his little noises? When I held him and looked into his eyes? That new little life, William Thomas, touched my heart on April 23, 2011, and changed me in the best of ways. I did—and still do—adore everything about his sweet spirit, his tiny features, and his deep love for others.

“Behind every young child who believes in himself is a parent who believed first.”
–Matthew L. Jacobson

 My husband and I had high hopes for my son before he was born, as I’m sure most parents do. And we still hold high hopes for him. However, in November 2013, we allowed a group of women from an organization called Early Steps to enter our home, evaluate our son, and ultimately determine that he possessed “pervasive developmental delays” in all areas. They picked at flaws in my sweet boy. They filled me with doubt. My husband and I shared tears of anger, fear, and sadness. And thus began our journey.

To sum up a lot that you probably don’t want to hear: William took two trips to All Children’s for audiology evaluations before he was cleared. He started seeing an early interventionist in our home. She visited once a week until his third birthday and provided us with strategies to improve William’s communication and play skills. In January 2014, William’s speech evaluation determined he possessed expressive and receptive language delays. He started attending speech therapy sessions twice a week for 45 minutes. This is something that he is fortunate enough to still participate in, though insurance changes now allot him only 30-minute sessions. Shortly after beginning speech, William received an occupational therapy evaluation in our home, which left me in tears. The therapist noted that William could not jump (yet), alternate his feet when walking upstairs (yet), or dress himself (yet) and implied that he would live a sedentary lifestyle because of hypotonia—low muscle tone. Because of his birthday approaching and because of this woman’s own health issues, we were unable to begin therapy with her. And for that small blessing, I’m thankful. It was just too much all at once. In February 2014, we met with Pasco FDLRS and in March, Longleaf Elementary School accepted William into their lowest and youngest developmental preschool classroom. We attended an IEP meeting with his teachers and support staff, and he started school.

William learned to identify pictures of objects and verbs. He followed routines. He was fully potty trained just about a month before he turned 3. He learned to jump on Good Friday—something I wasn’t sure I would ever see and a moment I will truly never forget.

On May 5, 2014, I called All Children’s Hospital to make an appointment with a developmental pediatrician based on the recommendation of multiple professionals involved in William’s life, including the primary pediatrician we adore. The date they gave me? December 5, 2014. At that time, seven months seemed like an eternity. How could a doctor not have availability for seven months? Why did I even need this appointment anyway? My son is perfect. He drives me crazy for sure. But he’s perfect. And no overbooked pediatrician who doesn’t have time in her busy schedule to meet my sweet little boy for seven months could possibly tell me anything about him. She couldn’t possibly know him. She couldn’t possibly decide what makes him tick. She couldn’t possibly appreciate all of his idiosyncrasies. And even if she did, I wouldn’t believe her.

I rationalized that seven months would give us time to research, time to prepare questions for this specialist, time to cross other items off our to do list, time to allow the speech therapy and special needs preschool to work their magic, and time… well, time to adjust. Time to learn to accept what we knew would be coming. Time to realize that milestones coming so easily, so effortlessly to so many of our friends’ children would require great patience, attention, encouragement, waiting, and eventually, celebratory praise.

“Your greatest contribution to the kingdom of God may not be something you do, but someone you raise.”
–Andy Stanley

Just before the end of the school year, when William’s teacher told me that he was cognitively able to move into the pre-k VE program, we rejoiced as a family. Throughout the summer, I planned lessons for him and spent each day determined to help him progress. I wasn’t in Mrs. Rodriguez mode anymore. I was just Mommy.

In June, he visited a neurologist for an EEG.

In July, he was evaluated, and thankfully, cleared by a physical therapist who said he simply needed inserts for his flat feet.

In August, he went through yet another occupational therapy evaluation and was recommended for 60-minute sessions twice weekly. He was placed on a waiting list of 70 other kids… Still, we wait. Later in August, I watched him embark on a new school year in a new classroom. It seemed every other day was “great” and every other day was “rough” with some “okay” days sprinkled in.

In September, an orthopedist examined William and put to rest all our concerns about his flat feet and low muscle tone—nothing is physically wrong with him and no shoe inserts necessary.

In October, the kid couldn’t catch a break. He was sick every weekend. After battling a serious stomach illness and just not being “himself,” he began acting out by hitting, kicking, and biting: habits that have yet to fade. He experienced frustrations. We experienced frustrations. On the up side, he perfected requesting things using “I want” phrases. He learned his teacher’s name.

For 7 months, I held on tightly to every word he spoke, every time he engaged me and grabbed my hand, every time his feet left the ground, every time he pedaled his bicycle or kicked a ball.

And for 7 months, while some people knew a little of what we went through and others remained ignorant, I moved through life robotically with an imaginary hourglass trailing behind me everywhere I went, the sand slowly falling, falling, falling. 6 months… 5 months… 4… 3… 2… 1…

Today, we met Dr. Mary Pavan, a developmental pediatrician who officially diagnosed my son with autism spectrum disorder. Before we walked into the building next to USF—a place my husband and I began our journey into education, a place that seemed like home to me—I knew what was coming. I think somehow, I always knew. But I needed to process it. I needed to feel those feelings. Because it’s a lot.

“Mothers of children with autism have stress levels comparable to combat veterans.”
–University of Wisconsin-Madison

The range of emotions, the litany of thoughts… It’s hard to describe. At one point, I wanted to scream and to cry. My husband and I wanted to grieve the “typical” parenthood we had pictured while we sat in offices and combed over piles of paperwork. Ironically, at another moment, we wanted to celebrate.

I wanted to treat my darling little boy to ice cream, buy big primary colored balloons, announce to the world via Facebook and Instagram that he received a diagnosis the way so many users let their friends and family know the gender of a baby or congratulate each other for various life events: engagements, weddings, graduations. I wanted to share it with everyone because it’s something I’ve had nearly a year to wrap my mind around. Because it’s something so very real to me. Because it’s something I really haven’t spoken about. Because this is my son. Because it’s his life, it’s part of who he is and what he does and why. And because although I’ve spent a year asking why and a year learning not to compare him to others and a year strapped unwillingly in a front row seat on the proverbially emotional rollercoaster, I am so incredibly, indescribably, emotionally, and powerfully proud of him. I am proud of him. Damn proud of who he is, who has always been, who he is becoming, and whoever and whatever he can be—chooses to be in the future. I am so very proud.

This diagnosis, though both helpful and confusing, does not define him.

“See the able, not the label.”

It took me a year to get here. A year of walking places I’ve never walked before. I’ve devoted over a year of my son’s three and a half years to determining how his mind works, to figuring out what others think is “wrong” with him, and we still haven’t scratched the surface. But we’re on our way. I’ve spent a year avoiding play dates with other mothers and their children—sorry if you’re reading this and you’re a mom who I’ve canceled on—or going to them and wishing I hadn’t because how come your kid can do that and mine can’t… or won’t. I’ve spent a year answering—or, not knowing how to answer questions like, “Why doesn’t he talk much?” and “What is he doing?” when I look at him and just see what he says and does all the time. He’s not weird to me. He’s just my William.

“My child having autism doesn’t change the way I feel about him… The way you treat him changes the way I feel about you.”

Though it is a private matter and there are some things we want to keep within our family to preserve the trust we’ve built with our son, we also understand that others out there can help us along this autism journey and vice versa. It takes a village. Our son needs more advocates. People don’t understand, and our nation—our world—needs more acceptance for children with special needs. How can you begin to understand my boy if I don’t share him with you? 

“I thought I would have to teach my child about the world. It turns out, I have to teach the world about my child.”

So, since I will be reaching out to other parents like me, and since I believe that the only way to work through things is to talk about them, here are some facts that can help you understand my William:

  1. William does not always answer to his name or make eye contact. He may not acknowledge you when you walk into a room or know exactly how to properly engage with you. His social skills are different. Talk to him. Engage him anyway. And please, ask your kids to do the same. A year ago, he wouldn’t talk on the phone. He wouldn’t say “hi” or “bye.” Now, he does. Try him. He’s worth it.

“A child with autism is not ignoring you. He is waiting for you to enter his world.”

  1. William communicates if you listen and look hard enough. The amount of language he possesses is significantly smaller than those of his counterparts. He asks for “ice please” and “I want cookie” and “I want wally-pop” and “hot dogs” and “pizza” and “water” and “milk” on a regular basis. But sometimes, he doesn’t talk or he can’t come up with the words. One of my friends looked at a picture I posted on Instagram of William standing by the front door holding the dog’s leash, smiling at me with the dog standing next to him. “I think he communicates just fine,” she said. Every night, he grabs my hand, pulls it onto his pillow, says, “sweeeeeep” and pretend snores. He doesn’t have to say, “Mother, will you please lie down next to me and fall asleep here?” I already know that’s what he means.

“Not being able to speak is not the same as not having anything to say.”

  1. William gets frustrated just like everybody else. Only sometimes, he cannot deal with his frustration in a healthy manner and can’t say why he’s frustrated and has to be shown what “gentle hands” do and how to control his little emotions. Some days are great days. Other days are bad days and we just have to hope the good ones outweigh the bad.

“Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.’” –Mary Anne Radmacher

  1. William can. I got so tired through this journey of hearing professionals—PROFESSIONALS—tell me what my son cannot do. That he had low muscle tone and would take a sedentary job as an adult. That his lack of language and social skills could prevent him from having friends. That he cannot stand on one foot, that he cannot draw a circle, that he cannot imitate a specific pattern, that he cannot string beads—which by the way damn it, he can, he just doesn’t want to perform like a trained monkey right now in this strange office—that honestly? I’m over it. He can. Maybe not now. And maybe not tomorrow. And if not tomorrow, then he certainly can He can try. And maybe one day, whatever that is that he “cannot” do right now, he’ll learn to do.

“She doesn’t see autism; she sees possibilities.”

  1. William is making progress. A lot of the fear surrounding an autism spectrum disorder diagnosis stems from the prevalence of regression. Often times, the biggest red flag that causes a parent to question or raise the topic of autism is the fact that his/her precious little one stopped doing something he/she had done previously, or lost language altogether. William has never experienced regression. He moves much more slowly than other kids, but he is moving. And every time he moves, I’m there, and I want to be there, to congratulate him. Progress is progress. 

“I walk slowly. But I never walk backward.” –Abraham Lincoln

This diagnosis doesn’t change us. It doesn’t change him. He’s still the same crazy-haired boy who loves to be outside in nature, walk his dog, watch Frozen and sing the songs, stack blocks, play in water, jump, run, swing, and slide, sing songs, eat (omg—the kid can eat), and give kisses. This diagnosis doesn’t change my love, my opinions, my hopes for my son. It does cause me to adopt a realistic point of view, to live in the here and now and make small goals for our future. And that’s okay.

“Always keep a bottle of champagne in the fridge for special occasions. Sometimes the special occasion is that you’ve got a bottle of champagne in the fridge.”
–Hester Browne

This year, I became the co-adviser of my school’s yearbook for the first time. It’s been an interesting new endeavor thus far and I’m so blessed to have two colleagues to learn with and learn from, who have been understanding of my personal life when I’m not entirely myself at work. During the first two weeks of school as the advisers and new yearbook staff intermingled and attempted to bond, we came up with a theme for this year’s book: anchored. We discussed its relevance to our school, how we’re grounded, how the students are temporarily safe and docked in a harbor while they learn before setting off on various journeys elsewhere. We used words like joined, linked, connected. We squashed the negative preconceptions of the term “anchored,” which can call to mind synonyms like “trapped” with no way out. Because the anchor is essentially good. It provides foundation and a way out. It provides a pause, a time to reflect, a time of stillness amid the crashing waves.

So, I think it’s fitting to focus on the phrase “anchored” as my family traverses its own storm.

“Sons are the anchors of a mother’s life.” –Sophocles 

William has grounded my husband and me. He has given us focus. Purpose. I know what I’m going through is something other people fear. I know that what I’m going through, thousands of other families are going through. I also know that there are people who wish they were going through this, because their journeys in life are much more difficult, more tragic.

I believe in honesty. And I believe in tact.

If you’re curious, ask. If you wish to offer encouragement, I welcome it. If you have something critical to say, spare me. If you see my son, smile at him and call him by name, ask him questions, listen. If you want to complain about your chatterbox of a child, please seek another listener. If you want to suggest how I should take care of my child, respectfully, refrain. If you pity us, don’t. If you want to support us, to support William, to provide autism awareness and contribute to research, join us for the 2015 Walk Now for Autism Speaks on April 11, 2015. We’ll be there, celebrating William’s birthday a little early, celebrating the “different” children in our area, and celebrating the fact that the more people connect, the more people join, the more people link and anchor themselves to a common purpose, the more resources these kids will have, the more support their families will have, the more they will be able to contribute and connect to our world.

According to Dr. Pavan, William shows great potential to learn and interact with others. He asked her for “a ride please,” sat on her lap, and blew her kisses goodbye—something she says she doesn’t often experience with children on the spectrum.

He’s going to be okay.

We will continue to nurture our son. We will continue to teach him how to use his words and gentle hands. We will continue to fight insurance companies and attend a slew of medical and therapy appointments. We will continue to research dietary changes and supplements and essential oils and medications that may help our son focus, that may help his health improve. And, now, we will continue to talk about and be an advocate for our child and other children with autism. Hell, I may even finally make my Autism Pinterest board open to the public ;)

We will keep going.

Selfishly, I ask two things of my family and friends: 1) be sensitive with what you say and how you say it, and 2) please forgive me. If I seem “off” at all, give me some time and understanding. It was probably a rough night or a rough morning or a rough afternoon or a rough weekend with William. And by rough, I don’t mean toddler tantrum, stop throwing things across the room rough. I mean emotional rough. I mean, “Will he ever understand Santa and get excited on Christmas morning? Will he ever ask his dad to play catch? Would he even notice if I was gone? I wish he would call me by name” rough.

Prince William, not all days are rough. So many are beautiful. And even the rough ones are worth it. I love you high as the sky, deep as the sea, forever and ever and ever. To the moon and back.

Playground

Today changes nothing. Daddy and I will fight for you—and with you—until our last breaths.

“How old is William?” “THREE!”

William Thomas (or “William Tommy,” as you like to say), I cannot believe that another year has gone by, that your hair managed to grow longer and curlier, your smile is even wider, your personality happier, and you are now three years old. When I ask you, “How old are you?” you smile and say “THREEEEE!” You even try to put up three fingers—we’re still working on that.

Image

This last year presented quite a few obstacles. We experienced our ups, our downs, our in betweens. Mostly, this last year presented questions. Questions about your development, about your abilities, about your knowledge and understanding, and, inevitably, about my parenting skills. I’ve watched you struggle and overcome in speech therapy sessions. I’ve listened intently and written down every new word I heard you pronounce perfectly, even when there weren’t many. I’ve read the early adjusting reports and now the daily positive reports from your preschool, Longleaf, where you love to go and you’ve begun to thrive and flourish. I’ve watched you climb and run at Monkey Bizness and Gymboree and in our backyard. I’ve stood beside you while you mastered a new puzzle or stacked boxes and blocks higher than every before. I sat next to you at your first dentist appointment–you did great! I recorded you singing “Jake and the Neverland Pirates–and meeee!” Just this month, I heard you say “Wuv you” for real. For the first real time. Last week, I held your hands in a bounce house while you looked up at me, bent your knees, and yelled “Jump!” You can jump, Will! And I’m so very proud. I’ve been patient and waited until you were ready, and all of a sudden, you are potty trained, even waking me up at 3:30 in the morning because you have to go.

You are SUCH a big boy. And no matter the frustrations we’ve faced, no matter the walls you still have to climb over, no matter the days I get stressed or worried, one thing remains absolutely the same about you since the very day I met you:

You are happy.

Before you even squeeze your tired eyes open in the dim light of your bedroom every morning, you smile. For so many reasons—because I roll the car windows down, or because the dog is running in circles, or because I let you wear my big black and white polka dotted sunglasses, or because Gil says something funny on Bubble Guppies, or because I find you hiding under the table or inside the tunnel or behind the closet doors—you laugh your beautiful laugh and flash your perfect white smile with the pointiest canine teeth. And all is right with the world.

You are happy.

In the last year, your Daddy and I experienced so many great days with you. We took you to see the Rays win at Tropicana Field, and you walked around the stadium and got your first baseball card with your picture on it! I cannot wait to take you again this year, and next year, and the year after that and watch you get taller and taller in each baseball card. We took you to Disney World (again) and had an even better time than the first! You loved the night parade and watched it in your jammies :) We traveled with KK, Uncle TJ, and Mandy on a cruise to the Bahamas! You left the country for the first time! You were the best behaved child who has ever cruised in the history of the world, and you loved the food, the water rides, running around on top of the ship on the mini golf course, and just being with us.

photo-32

Daddy still calls you Buddy. I still call you Prince. And that’s really what you are to us. Daddy loves teaching you how to throw a basketball into the hoop and hit a golf ball. He takes you grocery shopping every weekend and you two bond like the best of friends.

You are my prince charming. I love taking you to the park and on walks around the neighborhood because you just adore being outside in nature. You started requesting to go on walks and you always want to include your puppy, Esme. This year, you learned to hold her leash and walk her like a big boy.

photo-33

You point out flowers and look up at the birds and everything you notice is so new and so beautiful. You look into my eyes and push my nose into your eye socket like your weirdo Uncle TJ used to do and you say “wuv you” and everything about you is just so prince-like. You have my whole heart.

Recently, you’ve begun to develop more preferences and you’ve begun to communicate your wants and needs much better than before. You point more, you identify objects more, you ask for “more milk please” and your little phrases “nan-baba” for “banana” and “hank you” and “ya welcome” are absolute music to my ears. However, your growth has also come with a few somersaults and bangs on the bedroom window when you should be sleeping (where do you get this endless energy?!), pouty faces, stomping of the feet, and a couple swats at Mommy’s or Daddy’s or Abuela’s face when you didn’t get your way. Thankfully, these moments are short-lived and overshadowed by your gentle, easygoing spirit.

Your teacher at Longleaf is proud of you. She takes pictures of you playing peekaboo behind the tree at the playground to show me. Your speech therapist is amazed at how many words you can say and how you belly laugh when she pretends her T-rex is going to eat your arm.

You are happy.

You bring joy to my life and to every situation, and that is such a rare quality in such a flawed, violent world. You are sunshine and you are flowers blooming. It is so fitting that your birthday is in the spring because your personality truly is life itself. You are new every day. Your spirit is warm on the coldest day and I cannot say enough about how highly I think of you, how deeply I love you, how powerfully you have changed me, and how strongly I believe that your future will be nothing less than magical.

I leave you with one little piece of advice:

“And above all, watch with glittering eyes the whole world around you because the greatest secrets are always hidden in the most unlikely places. Those who don’t believe in magic will never find it.” -Roald Dahl

Here’s to another year of happy, William. Another year of silly, magical, playful smiles and so much happy. Happy 3rd birthday, sweet prince.

I love you,
Mommy

I Promise: You Won’t Ever Be Lonely

It happened again today, as it does every so often. I held the dog’s
leash in one hand and pulled my son’s wagon with the other, strolling
up and down the streets of our neighborhood in the beautiful
spring-like weather. We do this a lot together.

Will and Puppy

A lizard crossed my path, the dog chased it, and I immediately felt a flashback coming on: there I was, 20 years ago, on my grandmother’s lawn, trying desperately to catch lizards alongside my brother. We had just moved to Florida.

I looked at my son and smiled at the thought that some day soon, he would chase lizards, too. Then I frowned when I couldn’t shake a quick thought that crossed my mind: he’ll do it alone.

Throughout the almost three-year journey of motherhood, I’ve cultivated and lost friendships over parenting differences and judgments. I’ve battled breast feeding or bottle feeding, homemade or jarred baby food, stay at home or work at home or work outside the home with a daycare/nanny/preschool. But I think the time people feel the most entitled to comment on my life is when I tell them that my son may be my one and only. I wrote a post discussing my feelings on having an “only child” which reiterated that it is my and my husband’s decision alone, but today, the topic struck me more deeply.

Because after I frowned, I thought. I closed my eyes and thought deeply about the future. And when I opened my eyes, peace overwhelmed me because I came to a conclusion, something I know without a shadow of a doubt: my son will not chase and catch lizards alone. I will be with him.

Life may not always go your way
And every once in a while you might have a bad day
But I promise you now you won’t ever be lonely

Maybe instead of having a younger brother in his memories, as he grows he’ll look back on school days when I picked him up and took him on a special frozen yogurt date to reward his good grades. He’ll envision me crawling on my knees and hiding in closets during hide and seek. He’ll picture his daddy pitching him a baseball, his mommy standing next to his bike as he tries to pedal alone, his partners in crime helping him kill the bad guys with toy swords or squirt guns.

The sky turns dark and everything goes wrong
Run to me and I’ll leave the light on
And I promise you now you won’t ever be lonely

He’ll remember the books we read and the stories we made up just for fun. He’ll think about the birthday parties we planned together and the friends he invited to play. He’ll see the years he spent in the yard climbing on and chasing his favorite dog, and the times as a toddler when he wanted to be a big boy and hold the leash. He’ll remember his toes in the sand, the shells he captured, the squint of his eyes, and jumping in the water holding my hand and my husband’s hand–The Three Musketeers.

For as long as I live 
There will always be a place you belong
Here beside me
Heart and soul baby — you only 
And I promise you now you won’t ever be lonely

He’ll think about how monotonous it must have been for me to sit at a table and decorate and address Valentine’s day crafts for his classes–and I’ll tell him, or maybe I won’t, that those quiet moments were the most precious to me. He’ll remember tea parties with mommy and his stuffed animals. He’ll think about his classes and games at Gymboree and his daddy juggling just to make him laugh.

It’s still gonna snow and it’s still gonna rain
The wind’s gonna blow on a cold winter day
And I promise you now you won’t ever be lonely

I hope he’ll look at home videos of holidays with his large Puerto Rican family, or see pictures of moments with my small family–KK wearing a stethoscope to play doctor, Gramps pushing him in the swing and letting him kick his chest, Uncle Teej trying to distract him from the show he’s watching by dropping socks on his head just because.

You’re safe from the world wrapped in my arms
And I’ll never let go
Here’s a shoulder you can cry on
And a love you can rely on

Whether I ever decide that I am ready and willing to have another child–and that day may never come–my son will never ever be alone or lacking in the deepest kind of love. So thank you, small lizard, for showing me my past. Thank you, Mom, for giving me the gift of an energetic brother to play alongside me. But thank you, William, my one and only, for showing me that true love abounds no matter how many family members there are, where they are, or what they do together. My heart is yours and I hope all of your flashbacks are filled with joy, peace, and play whether you are with me, Daddy, at school, with extended family, or anyone else who may or may never come along.

For as long as I live 
There will always be a place you belong
And I promise you now you won’t ever be lonely