Change is often a gradual process. The subtlety of its signs are often overshadowed by our daily routines. It’s not that we don’t notice our children daily—we do. We learn an incredible amount of completely random things through our daily interactions (for example, red food coloring has historically been derived from ground-up cockroaches). However, it isn’t until the weather gets colder and flip-flops take a backseat to sneakers that we realize the same children we lay eyes on daily have somehow outgrown every pair of closed-toed shoes they own!

Other times, change is abrupt and the universe undergoes a massive shift, overnight. We wake up on the First of November and after reasoning with our children about why Halloween candy isn’t on the menu for breakfast (okay-maybe just one piece), we realize that just as quickly as we’ve flipped the page on the calendar, we’ve welcomed in an entire season of change.

The arrival of November represents the beginning of the season of being thankful. Once the clock strikes midnight and Halloween is but a memory, everyone seems eager to share with the world all of the reasons for which they give thanks. Social media becomes a literal sounding board for this very purpose. Unlike other trends, this is one I can (and do) get excited about. I love the positivity of it all, mostly because it opens the door to self-reflection in a very refreshing way. Too often, we lose sight of the fact that social media is, in essence, nothing more than a highlight reel that invites us to compare our lives to others’. The sudden shift in perspective that November seems to bring is a welcome one. Taking the time to find something to be grateful for in every day is good for the soul.

The time I’ve spent reflecting this month has taught me more about myself and my values than in any years, past. The things that I am thankful for this season come from a much deeper, infinitely more personal space in my heart.

First, I am thankful for the small group of family members and friends who cared enough about my daughter, Piper, to say the words that hurt to hear instead of the words I wished to hear. The best of grandmothers thinks all her grandchildren are the closest thing in life to perfection, so I know how much it must have hurt you to have to stand up and point out to your son and daughter-in-law that your granddaughter desperately needed help. As a parent, the pain that comes with realizing that your child has real challenges is visceral. You feel helpless, yet you temporarily live in a phase of grief and denial. In that phase, you feel frozen and unable to act. It often takes a full blown “Come to Jesus” meeting, not a gentle nudge, as a call to action. I am thankful for you beyond words, because you didn’t allow me to unpack and set up residence on denial island.

I am thankful for the growing bond between all three of my children. When you have multiple children and one of them is diagnosed with autism, you get so caught up in the whirlwind of social evaluations and therapies, it’s easy to forget for a while that the most fundamental social interactions your child can establish happen right in your home, with their siblings. As soon as Piper gained the ability to communicate, I saw these beautiful social relationships begin to flourish. I never knew seeing three children dismantle a living room to build a fort together could be so beautiful. I am so thankful for the significance of the underlying beauty in all of that chaos.

I am thankful that my oldest daughter has regained her confidence and sense of self. The preteen years are never easy to navigate, emotionally, but I would be remiss to deny that the unsteady path our lives took us on for a while contributed to some of her angst and self-doubt. I know it worried her deeply to see her little sister struggle. I am thankful to  catch a glimpse of her smiling as she daydreams instead of finding her up in the middle of the night riddled with worry. I’m thankful for the re-emergence of her spirit and for everything about who she is.

I am thankful for the compassionate heart of my son. At the beginning of the year, I tasked him with walking Piper to her classroom each day to ensure her safe arrival. Months later, she knows exactly where to go on her own. I didn’t realize he was still walking her in until she was home sick last week, and her teacher told me that he reported in to her classroom as usual just to announce she’d be absent. Just last night, he asked to come with me to watch her ballet class. As she danced, he touched my arm, never taking his eyes off of her and said “Mom, she’s doing great! Tonight, she’s the same as every other girl in that room.” I don’t know that he will ever realize how profound a statement that was. I am thankful every day that he is so aware of her needs and her feelings.

I am thankful for early intervention and the team of individuals who have given of themselves (and continue to do so) throughout Piper’s journey. I’d like to look at this beyond the traditional facts about intervention at a young age and quality of life. On a personal level, I am thankful because the results of this immense, collaborative effort have given me gift of quality time with my children. For so long, I dreaded trips to the grocery store. I ventured out alone. Those trips were so lonely for me. They were honestly hard to get through for a while. I’d see mothers with children Piper’s age chatting happily through the aisles, and I didn’t feel like we’d ever get to that point. She would get so overwhelmed, I would never bring her with me. It felt like I was punishing her. My older children stopped asking to go, probably because I was so stressed and not a lot of fun to be around.  I’d be gone twice as long as I should have been, because it took me that long just to motivate myself to get from the car into the store. Now, I have company just about every time I go anywhere. I’m sure that at some point, like any mom, I’ll long for a trip to the store by myself, but not right now. Right now, I’m just thankful for the opportunity to share the experience with children who enjoy being with me, and with each other.

There are so many things for which I am thankful—I haven’t even scratched the surface. It’s been amazing to realize that the things I’m most thankful for aren’t “things” at all. Maybe I’m just growing up, but I think it has more to do with the perspective I’ve gained through learning the ins and outs of raising a child with autism.

No matter what the reason, it’s always a good time to be thankful. Despite what you see on the surface, no one has an easy journey through life. It’s easy to get down, and even easier to stay down. That’s why it’s so important to reflect on all of those tough days that you’ve survived, and to be thankful for all the ways you’ve grown.  I encourage any of you, regardless of your personal situation, to take the time to read those “Why I Am Thankful” posts on your newsfeed instead of scrolling past them. It is true that on most days, maintaining a positive attitude is a choice we make, but it’s also true that positivity and a grateful spirit can be contagious!

 

Some days, being the parent to a child with autism is like sitting in a car during a hailstorm. The hits are direct and steady, yet one by one, each pellet bounces off of the durable exterior. The storm is often over as swiftly as it began and within minutes, the sun is shining. If you’re lucky, there isn’t a trace of damage on the car’s exterior–no dings, dents or blemishes. As you continue about your day, passers-by would have no inkling of the tempestuous conditions from which you sought refuge earlier. The lack of physical damage doesn’t fool you into forgetting, though you wish it would. Bumps and bruises or not, you feel the residual sting at every point of contact, and collectively, the events of the experience weigh heavily upon your heart.

Some days, it is like waking up to several inches of freshly-fallen snow. As you peer out the window, the sparkling white landscape reawakens a child-like sense of adventure. Something about a snow day is revitalizing. It is almost as if its pristine beauty lures you outside with the promise of a new beginning. You can appreciate this to some degree, but you are an autism parent. You’ve become an expert at analyzing your surroundings. You know all too well that ice often comes along with all of that beautiful snow. Ice is slippery and represents loss of control. Ice is not your friend. Additionally, you know that snow is not a forgiving canvas–far less so than the exterior of a car. With every move you make across the snow, you leave a mark for all to see. Sometimes you leave joyful marks, like the tracks of a sled or a snowman. Other times, the impressions you leave behind are the result of a sensory meltdown. Two sets of footprints become one at the point where you have to pick up your very overwhelmed child and trudge home, just about collapsing beneath the weight of it all. Those types of experiences are more difficult to brush off because they leave you and your child exposed and vulnerable to the questioning eyes of others. (Yes, you do learn to brush off the looks of others with time, but you are still human. It still makes you sad that an experience that is so joyful to other children is downright painful to your own.)

Lastly, many days as a parent to a child with autism are regular days with sunshowers. Your chaotic little life has become your normal. Contrary to what many believe, you don’t calculate every single move and autism isn’t always on your mind. Avoiding your child’s triggers becomes second nature and their idiosyncrasies are only peculiar to others. You don’t spend all of your time in “battle mode.” Like every other parent to any other child, you just live. Messy moments, like sunshowers, sneak up out of nowhere, but they aren’t enormous obstacles. If you are able, you find cover to protect you from the rain. If not, you get a little wet but you don’t worry too much about it. There is no time to worry. Before you can even consider worrying, in moments like these, the rain has stopped. The sun is bright. You help your child search for the rainbow, but by now, you’ve learned that your child is the rainbow. They are the bright, beautiful slice of light that makes it all worth doing over every day, regardless of the weather.

 

A little over a year ago, I took a tremendous leap of faith. With the blessing (and immense support) of my husband I left a job that I loved and returned to school to pursue my dream of becoming a Physician Assistant.

Allow me to backtrack, a little. Like many others before me (and many yet to come) I evaded the “what do you want to be when you grow up” question for as long as humanly possible.

As a young child, I dreamt that one day, I’d save lives working as a pediatric surgeon. (Keep in mind that at this time, I had very limited knowledge of the healthcare profession. In my mind, just two potential pathways existed. I could either be a doctor or a nurse. I chose what seemed to me at the time to be the more grandiose of the two.)  The visions of performing surgeries on children came to a screeching halt during the winter of my eighth-grade year. My younger brother was run over by a truck while sledding and nearly lost his life. I suppose that seeing someone that I love so fiercely being kept alive by machines  that breathed for him while large tubes drained fluid from his crushed chest just made things too real.

Time passed, and as my old dreams faded from my mind, newer, equally grandiose dreams came flooding in. For a while, I was set on being the first woman to play Major-League Baseball. I got down and dirty and played Little League with the boys for a while. Eventually, I returned to playing softball, and my shape-shifting set of goals steered me towards the desire to be the first female commentator for Major League Baseball. More life happened, as it always does, and Suzyn Waldman “ruined” that dream for me. (I still get a chuckle at the sour taste I get in my mouth when I spit out her name.) I rationalized that maybe  I wouldn’t be the first female commentator, but I could certainly be the best!

In 2000, I set off to college at Penn State, and in 2004, I earned a Bachelor’s Degree in Journalism with a concentration in sports. I even worked a brief stint with the Penn State Sports Network before relocating to North Carolina.

The thing is, as hard as I tried to be successful and achieve my (most recent) dream, I never felt truly complete or comfortable doing so. And while I said my dreams of medicine left my mind in the wake of my brother’s accident, I learned that they never truly left my heart. I returned to working in the medical field. I worked as a receptionist. I did billing and insurance. I worked in management in an Orthopaedic clinic. The entire time, I wanted more. I wanted to work directly in patient care.   Eventually, I took a sizeable pay cut and resigned from my position in management to work clinically as a medical assistant. On my own, I became certified by the State, and in a stroke of good fortune, over the course of six years, I worked for two doctors, a Nurse Practitioner, and a Physician Assistant who recognized my desire of learn and cultivated it.

Time and experience broadened my lens to the many professional opportunities available in a healthcare setting. I worked in clinic for years, trying to find my niche. Observing a phenomenal Physician Assistant run a pain management clinic like a well-oiled machine gave me the clarity for which I’d sought for, for years. I finally knew what I wanted to be when I “grew up.”

The incredible providers I worked for knew I needed to move forward. It was with their blessing and encouragement, as well as my husband’s, that I said goodbye to my job and returned to complete the prerequisite courses I needed to apply to the PA program, itself.

I did so with a fury. I tackled Anatomy and Physiology I and II, Microbiology, Calculus and Chemistry like my life depended on it. I was always a decent student, but suddenly, I was a 4.0 student with a dream–one well within my reach.

Then, in the process of filling out applications, I was asked a very pointed question. “Why?” I was asked to point out one specific life experience that shaped my goals and my professional vision, and I was asked to do so in approximately 250 words.

There are so many ways to answer that question, none right or wrong. Several of them, I have already mentioned. Yet, one thing that I have yet to list as a reason kept screaming at me from inside my head.

Piper.

You see, I didn’t just pick a convenient time to leave the workforce and return to school. I made that choice in the midst of the unknown. My child was diagnosed with autism. My husband and I were fresh into a new journey, virtually in the dark, and I chose to leave my comfort zone and pursue my dream all while learning to live life in a whole new way. Put into words, it almost seems crazy. In reality, it has made me a better person and I believe it will make me better healthcare provider, too. So I did what that Journalism degree taught me to do. I put pen to paper. In approximately 250 words, here is what I came up with:

“How did I get here?” On the surface, this seems like such a benign question. Admittedly, it is a question that I have asked myself with some degree of regularity in the two years that have passed since my youngest daughter was diagnosed with autism.

Piper’s diagnosis wasn’t a singular, defining moment in my life. Rather, it is representative of the summation of an ever-increasing amount of moments that will continue to shape who I am personally and professionally. Piper’s diagnosis was a catalyst into the journey of the unknown.

While it may seem incredible that such an unpredictable journey could provide clarity in terms of personal awareness and life goals, for me, this journey has been nothing short of enlightening.

Navigating appointments as the voice of an individual who was largely nonverbal has been my greatest lesson. It served as a reminder of how important it is to empower family members to learn from experiences and advocate for their loved one, when necessary. Most importantly, I have learned to “listen” astutely with many senses at all times. Even when working with a verbal patient who has no family present, there are times when nonverbal communication fills in critical pieces of the puzzle that would be easy to overlook, otherwise.

This experience has highlighted the values that separate a good medical provider from a great one, and has ignited the spark inside of me into a full-blown fire. It has made it clear that I am capable. This experience is “how I got here” and its ever-evolving nature will continue to motivate me to be resourceful when caring for others.

And like sands through the hourglass, now I wait.

What I have realized is that this waiting period is scary! When you start out on the journey, it feels like it will take forever. Then, suddenly one day, it hits you that you’ve done everything you can, and you have to have faith that it’s enough. It’s totally different than waiting for acceptance to college out of high school, that’s for sure.

Waiting has proven to be tough for me. Perhaps, though, it’s just another important life lesson to be learned in the process.

 

I’m outside, looking in.

WE Are outside. She is happy, in this moment, while I am looking in like a young girl who doesn’t understand why her friends didn’t invite her to their sleepover.

“We” are me and Piper, my young daughter who is on the autism spectrum. I pointedly included her by saying “we” because this is more her journey than it is mine. With that considered, what I’m about to say may seem, to some, as self-indulgent. However, sometimes, I think that as parents to children with special needs, we get so caught up in advocating for our children that we suppress the feelings of loneliness and isolation that are sometimes a side-effect to our existence. Behind a brave facade, we harbor emotions that are raw and very real, emotions that need to be spoken and acknowledged before the smallest of moments leaves us feeling totally alone. Moments like I am experiencing right now.

Tonight should have been a victory to be celebrated, and in many ways, it was. My husband and I had the privilege of accompanying Piper to Kindergarten orientation. A year and a half ago, our daughter was lost, borderline non-verbal, and often aggressive. Her future was very uncertain. The mere fact that in just eighteen months,  she has graduated from the full-time autism classroom and is about to enter kindergarten is nothing short of miraculous. I am filled with more joy and pride than I ever knew my heart could hold. Yet, in this moment, I feel deeply lonely.

Tonight made me realize that no matter how proud I am of my little girl, there is a part of me that feels like I am frozen in time, watching the lives of others unfold. In moments like this, I feel completely isolated.

We entered orientation tonight and found seats at an empty table. I looked across the room and saw familiar faces- other parents and children from our neighborhood. One of the moms, a truly lovely woman, waved us over to join them, and my heart soared. The children all left together to acclimate with the teachers in one of the kindergarten classrooms, and we went through the information session. While I don’t know this group particularly well, we made friendly, comfortable conversation throughout. We picked up our children, and I left feeling positive.

Then, a few minutes ago, I logged on to my Facebook account. As expected, I saw pictures of many of the children at orientation. Each one made me smile. Then, an innocuous comment on one of the photos brought my repressed emotions to the surface. One of the moms mentioned that she wished she’d have snapped a photo of the girls walking out of the school, hand-in-hand. I smiled, for it was a beautiful mental image, but at the same time, my heart dropped and I felt like an outsider all over again.

As a rule, I don’t speak negatively about my daughter having autism. But tonight, I have to wonder, if autism wasn’t our reality, would Piper have been included in that sweet moment?

These are wonderful mothers who have offered me support time and time again when I’ve needed it. My emotions are my own, and they did nothing wrong. I said it myself, earlier- as a group, I don’t know them particularly well. Would we be part of that close group, though, if things were different?

I am well aware that inclusion is a two-way Street. Our schedules are drastically different. Through early intervention, Piper has attended full-day Pre-K. The other girls have been in half-day preschool together, and have created a bond spending time together during and after school, when we simply weren’t available.  Still, I long for that kind of bond for myself, almost as much as I do for Piper. I long to fit in somewhere.

It’s hard to create lasting bonds with other parents of the children in my child’s special needs class. They are as busy as we are with therapies and appointments. They all have varying levels of needs, and each year, most of the class turns over as the students are re-assigned based on need. Perhaps knowing that this is the group of girls that Piper will remain in school with for years to come is what makes me want us to belong so badly.

I know the coming year and those thereafter will present opportunities for friendship for Piper and me, alike. Tonight, though, I feel a little lost and empty, and I know I can’t be the only one feeling this way. Acknowledging my feelings is the first step to action. I will continue to put one foot in front of the other until I find my way.

 

 

 

 

“Some days are diamonds,
Some days are rocks.
Some doors are open,
Some roads are blocked.”

Since childhood, I’ve enjoyed Tom Petty’s music. The words above are lyrics to one of my favorite songs, “Walls.” Admittedly, they resonate on a much deeper level on days like today…days when Autism wins.

All parents with a child on the spectrum know that the potential for turbulence is always lurking just beneath the surface. Through experience, we become more in-tune to warning signals from our children that are nearly imperceptible to others. On good days, we are able to intervene and diffuse the situation. Not all days are good days, though. Some days leave us feeling depleted, and even worse, helpless. That was today, for me.

Piper’s progress has been significant and steady as of late. In retrospect, that things have almost been going a little too smoothly should have provided some foreshadowing that trouble was brewing. We celebrate her victories and accomplishments with fervor, as we should. She has worked so hard! The flip-side is that celebration often comes with a cost. Floating on cloud nine means that when the bottom falls out (and it will, repeatedly) you have further to fall. And you feel every extra inch.

From the moment she got up, this morning, Piper was displeased. When we told her she could not eat a fourth orange yogurt for breakfast, her temper flared, and she just couldn’t quite shake it off. I wonder if she stewed about it all day, because when my husband picked her up from school, she mentioned the yogurt before she even said hello. (Okay, that was actually kind of humorous!) At bedtime, when her favorite pajamas were in the washing machine, she crumbled. I offered her a choice between several alternatives, which she promptly threw across the room. Soon, she was stiff and screaming. Things only got worse when she finally got into bed, only to realize that one of the approximately forty-six critters she sleeps with was missing. We tore her room apart, to no avail. She was upset about the toy. She was in a frenzy again about the pajamas. I told her I loved her, and she pushed me away and said “No.” I tried to sing her our song, and she pushed me away again. I said goodnight and got up to leave the room, and she cried harder. It  was just one of those days where nothing I had to offer was good enough.  As I closed the door behind me, still hearing her cry, I realized that today, autism won.

One of the hardest things about these turbulent episodes is that I know she is not just acting out to give me a hard time. She is acting out because she is having a hard time. She is hurting, and there is nothing I can do to make it better. I know she will work through it, but in that moment, I feel like I am inherently failing my child and it is painful. The only option, at that point, is to buckle my proverbial seatbelt and sit through the turbulence with her.

To the mom that got slapped in the face tonight when all you wanted was a hug, I see you.

To the dad who took the time to make your child a special dinner, only to have it pushed aside for another yogurt, I feel your sadness.

To the parents who look sadly at each other as your child writhes on the floor in a fit of despair, my heart hurts for you.

Even after being slapped, Mom, you gently told your son you love him. Your soothing voice and kind words were still the last thing your child heard before he drifted off to sleep. Dad, even after your effort to provide a good meal for your daughter was rejected once again, you made sure she didn’t go to bed hungry. Mom and Dad, you shared a painful moment as your child sat there between you, inconsolable. But you weathered the storm with her. When things began to calm down, you sat with her and comforted her until she finally went safely to bed. You were present. None of you gave up when everything inside you wished you could.

For all of you, just like me, who ran out of secret weapons, autism won today. But please know that you didn’t lose. You showed your child that they can count on you, even when things get out of control. You made it through the turbulence together, providing a safe outlet when it was needed the most. I know it doesn’t feel like it now, but every time autism wins, you win, too. Tomorrow, you will be stronger.

I am having a “moment” tonight. It has nothing to do with the true meaning of Easter Sunday, it’s purely personal. It is the kind of moment that I should have seen coming, but didn’t want to.

What is it about the eve of this particular holiday that has me feeling so emotional?

I am sitting here alone in the living room, so tired, but I can’t get up and go to bed. I’m just taking it in…the sheer innocence of it all. Treat-filled eggs have been strewn around downstairs. Baskets, full of simple treats and treasures sit just below the mantle. A scavenger hunt is ready and waiting, leading to the golden eggs that, over the years, have somehow become the favorite Easter morning tradition. It took almost two hours to get it all ready, and tomorrow morning, it will be torn through in minutes.

I know all of this already, and I can’t make myself get up and go to bed. It’s like I’m afraid I will blink, and it will be over. Not just the egg hunt, or the scavenger hunt. The innocence.

Why didn’t I feel this way on Christmas Eve? I suppose it’s because regardless of whether Santa is part of the equation, there is always something about Christmas that will be magical. It’s everywhere, and it starts earlier every year. There are so many moments to soak up during the Christmas season.

In comparison, the Easter holiday is but a fleeting moment, which tonight seems to parallel the short period of childhood innocence.

There are a million things I needed to be doing for school this weekend, and I haven’t done one of them. I haven’t been able to take my eyes and ears off of my children. I couldn’t get enough of hearing them talk about Easter morning, and what was in store. More, there were the subtle cues that have me wondering if this will be the last time they go to bed believers.

My six-year old son has been excited for two weeks, asking every day if there were more decorations.

“We have to be ready! We can’t miss this holiday! We have to have everything ready for the Easter Bunny!”

Was his abundance of excitement this year a cue for me to truly listen and not miss a single moment of it?

Then there were the questions from my nine-year-old while we decorated the other night.

“So, moms and dads just keep the eggs and the buckets for the hunt at home? They leave them here for the year to help the Easter Bunny?”

Suspicion, loud and clear. Later on, she shook her head at her brother as he bounced in excitement.

“Aren’t you a little old for-” she started. The moment I met her gaze, she stopped, like she knew better.

Does she already know better?

I know we have a four-year-old daughter, so in theory, we still have a few years of innocence to fall back on. But this is one of those times that because of her autism, I feel like a stranger to her mind. I am not doubting her intellect at all in what I’m about to say, but I don’t know what, if anything, things like the Easter Bunny will ever mean to her. She enjoys hunting eggs and goodie baskets with the same delight as her older siblings, but hasn’t really made the “bunny connection” as far as I can tell. I could be mistaken. I hope that I am.

But this could really be it. Tonight may have been the very last time I had to ask my husband “are they asleep yet? Is it safe to get started?”

Easter morning will always be special, but it will never be the same once the innocence of it all is lost.

I’m awake tonight not just because I’m worried about whether my kids will stop believing in the Easter Bunny. I’m awake asking myself a million questions. Have I enjoyed them enough? Have I been present enough? Have I made enough memories for them that they will look back fondly, at these moments? Am I making a huge mistake being back in school when they want to be with me more than they want anything FROM me? Am I sending the wrong message by being so busy with school work? Do they feel like they are less important? Am I doing any of this right? Will I ever feel like I am? Do they know I love them so much just as they are that it aches to see them grow?

I’m sitting here alone tonight, taking in the innocence of their childhood, and I am terrified. I’m terrified that I will blink, and it will all be over.

I really need to go to bed, because my children will surely be up with this sun. I just need a few more minutes…

A few days ago, one of my best friends sent me a meme. Though the person who wrote it (and many others) obviously thought it was pretty witty, to the two of us, it wasn’t a “Funny! HAHA!” kind of share. After reading only a few lines of the message, I was seething. Before I go any further, here it is for you to digest:

The friend who sent it to me has a young daughter with a neuromuscular disorder. My own daughter has autism. She shared the post with me, because she needed a safe place to vent, and she knew I understood how damaging messages like this are to the psyche of parents like us- parents whose very existence is often fighting an uphill battle to create a world where our children aren’t viewed as different (or God forbid, a nuisance!)

Between friends, we began to exchange choice words about the person who, like many, chose to share this message in jest. The following comments were my knee-jerk reaction to what I’d just read:

“I’m about to post a screenshot of this on my own page and tell all of my friends to send her a “kind” message!” (For the record-I did not.)

Then, “People need to know that this is not ok, and that if they have children whose problems can be solved by these “simple” suggestions, they should consider themselves very blessed. Actually, no. I consider myself very blessed. They should reflect, and realize that the reason they weren’t given children like ours is because they are ignorant and don’t deserve them.”

It took less than 30 seconds before my own words made me cringe. I was ashamed of myself for my own reaction, because the spiteful nature of my message was just as inconsiderate as the message delivered in the meme, itself.

Regardless of whether you have a child with special needs, or whether you are even a parent at all, if you’re reading this, you are human. All humans have experiences similar to what I shared above, where the feelings in our wounded hearts reach our tongues faster than our brains are able formulate a rational, empathetic response. As a result, we often speak defensively. When my  own defensive statements made me feel ashamed, I chose to turn it into an opportunity to learn.

I knew I would write about this experience, but I waited a few days until I allowed myself to do so. The thing about words is, once you say them, they’re out there for good. Now that I’ve collected my thoughts, there are a few things I would like to ask you to consider.

First, if you stumble across something online that you find to be humorous, pause and reflect before you share it on social media. Is there anyone in your circle whose personal circumstances might cause them to be hurt by this message? Additionally, remember that once you share something publicly, anyone with access to what you share can instantly share it further. The ripple effect of social media is enormous. What you share as “friends only” still has the potential to spread like wildfire.

Second, if you find yourself on the receiving end of such a message and you do find it hurtful, take the same moment to reflect before you post a defensive message that passes judgement on someone you may not even know. Being bitter doesn’t make you any better.

Moving past social media, let this same idea carry over to your everyday life. If you are a parent, the carpool line is a perfect example of where this lesson can be applied.

There is no way to sugarcoat it- carpool drop-off at school is the pits. We all have somewhere to be, afterwards. It’s okay to be frustrated when the line seems to take ten times longer than it should. It is not okay to call someone’s young child names (especially ‘Snowflake’ – the connotation is disgusting.) It is not ok to accuse a parent of coddling their child when you see them wait a few extra seconds to get closer to the doors of the school. You might see the same car holding up the process each day, but the truth is, you have no idea why. A child in that car  might have autism, or a neuromuscular disorder, in which case dropping her off closer might be the more responsible, safe choice! That child might have anxiety, and the tone of their entire day might be dependent on that extra hug. On the other hand, maybe the reason you’re waiting longer IS, in fact, because someone’s mom errantly placed a lunch bag or project in the trunk while she was rounding up the crew. She’s not perfect, but neither are you!

We can practice good humanity by simply considering that frustration makes it too easy to pass judgement on those who we know little to nothing about.

Trust me, as the mom to a child with autism, I’m fully aware that I regularly slow things down a bit. I feel bad for those behind me, but I have a lot on my plate. I certainly don’t need the added guilt that directly results from needless judgement. Tomorrow, it might be you who holds up the carpool line. Would you want  someone to create or share a hostile meme about your morning?

 

 

Moms, dads, grandparents, and caregivers everywhere- let this serve as your official warning: If I am out in public with my little girl, and she begins to “act out” in a way that is foreign to you, I will quickly initiate that awkward conversation. I will say the words to which you might not know how to respond. I will meet your gaze, and tell you that my daughter’s name is Piper, and she has autism. I am that mom.

Please don’t mistake my intentions. I will not initiate that conversation to make excuses for my child any more than I will utter those words with the intent of backing you into a corner. My goal will be quite the opposite. I’ll tell you that she has autism to open the door to reciprocal conversation. I’ll want you to know that as my reality plays out before your eyes, it is ok to ask questions. I will tell you her name to make her “real” to you, and not just some child having a meltdown in a parking lot, or on a playground.

I will tell you as little or as much as you care to hear. I will tell you autism is different for every child. I will tell you that the behaviors Piper is exhibiting that may seem odd to you (like continuous spinning or repetitive actions) are actually helping to ground her in a situation that is beginning to feel overwhelming. I may even get personal, if the conversation leads that way, and tell you how painful it is when people choose to look away, as if she and the moment she is experiencing don’t exist at all. Because when it comes down to it, regularly-averted eyes and silence hit me with a much greater force than any words someone could speak out loud. Even if words are hurtful, to the person speaking them, Piper still exists.

As I said before, I am that mom. I will tell you about Piper, if you’ll let me. Perhaps we will have a meaningful conversation. That is my ultimate goal. Even if you don’t know how to follow up to what I have told you, and you change the subject or move on, maybe I will have given you something to think about later. Maybe you’ll look up some information about autism in your down-time, and the next time you find yourself in that situation with another mom like me, you’ll feel more comfortable reaching out. Maybe the information you find will enable you to give an informed answer to your own child when they as you why my daughter was acting that way. As long as a door opens somewhere as the result of my words, awareness will have spread a little bit more.

I seek to spread autism awareness, because it is key to the future of children like Piper. The little conversations you have with your children about her, and others like her, will shape how she is viewed and treated by her peers. This has a direct impact on self-esteem, especially in social settings, which can be most challenging for anyone on the autism spectrum.

My experience as the mother to a child with autism has taught me that sometimes people just don’t know what to say, and other times, they just don’t know if it’s ok to ask questions. By initiating a conversation that might feel awkward to you, I am giving you my permission (practically begging you, as a matter of fact) to ask away. I am an open book, and Piper’s story is still being written. If, in response to what I say to you during a brief encounter, you step out of your comfort zone and learn, this gives you the power to help write a positive chapter somewhere in her story. Just by learning, you have the opportunity to positively impact a life. What could be more rewarding, for either of us?

Just barely one year ago, my daughter Piper’s journey truly began.

Though she had been diagnosed with Autism six months prior, as those months had passed, the only ones truly affected by this diagnosis were her father and I. We spent that time traveling from one evaluation to the next, hearing terms like “severe expressive and receptive deficiencies” spoken about our little girl.  During that time, we remained outwardly strong and determined to do whatever was best for her, all the while, inwardly grieving the loss of the future we thought she’d have. For us, it felt like time had come to a screeching halt. For Piper, who was just three years old, nothing had yet changed. If she sensed the anxt we tried so hard to hide, she didn’t show it.

Then, as slowly as those six months had passed, someone hit the proverbial “fast forward” button on our lives. There was the first IEP meeting, where all of her delays were laid out in black and white. Nothing can prepare you emotionally for something of that nature. We knew she was having trouble at preschool, but it seemed so much worse hearing the words spoken out loud by someone who (we thought at the time) didn’t know Piper like we did. As the psychologist recounted her observations, they sounded like a story of pure loneliness, and it broke my heart.

“At times, Piper would look and engage with another little boy, however the interaction was limited to less than 10 seconds and no more than 2 times during the 15 minutes outside.”

It was glaringly obvious that our time on Denial Island was over. Now, Piper’s life would have to change, too. We had little time to ready for it, as she was given placement in a full-time, special-needs pre-K program, effective immediately.

And so, one year ago, we took her in for one last day at the preschool she’d attended for two years. We said our tearful goodbyes, and just like that, it was time for Piper to move on.

I sit here, just one year later, astonished by how unfounded so many of my worries really were. The strangers I had no choice but to entrust my child to have become like family, and the lonely, isolated  shell of a child Piper was at that time has long since become a stranger. The air that was once filled with silence and frustrated outbursts is now filled with the giggles of a 4-year old little girl who changes the lyrics of songs to make them about her friends! She has friends, which seems like a gift and a miracle wrapped up together.

If it is possible, in one year’s time, for a young child to lead a million-mile journey, Piper has done it.

One year ago, I blogged one of the most painful pieces I have ever written, my heart broken:

” I know this is just one chapter ending, and that Monday, another beautiful one will begin. But today, I am sad. Because this wasn’t the plan.”

In retrospect, I realized that in those words, I was expressing my own grief. The “plan” I referenced was mine, not Piper’s. Though she continues to face (and tackle) challenges, her journey is a beautiful one. My only plan, moving forward, is to continue to let her guide me. After all, this is her journey. I’m just lucky enough to be her mom.