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