To All Of the Parents, On the Days When Autism Wins

“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.

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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.

Pondering the Future of Holidays When My Children No Longer Believe in “Magic”

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.

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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!”

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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…

My Knee-Jerk Reaction To This Meme Made Me No Better Than the Person Who Created It

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:

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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?

 

 

A Note From an Awkward Autism Mom

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.

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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?

A Lifetime Of Lessons In Just One Year

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.

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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.

To a Person Who Will Always Have A Place In My Life

Someone who has played a defining role in my life over the past several years shared this article, today.

It spoke to me like nothing has in a very long time.

You see, the person who shared this used to be “the other girl in all MY selfies.” She was a best friend to me.

Now, it would be unfair and pretentious of me to assume that she was thinking of me when she shared it. I only knew her for a few short years. Surely, she had other best friends long before we became part of each others’ respective stories. And because she is a great person, I’m sure she has another best friend today. Still, certain aspects within that piece of writing resonated far too deeply in me to believe that the memories of our friendship didn’t cross her mind while she was reading it. I will swallow my pride if I’m out of line in making that assumption. Regardless, what I read affected me, undoubtedy even more so because she is the one that shared it. With that, and her, in mind, I would like to share an open letter of my own.

To the friend who I haven’t seen in a year, but will always have a place in my heart (and in my life):

I, too, still wish you the best. A year ago, when our story was at the last fork in the road and our lives led us onward in different directions, you had just reached a beautiful place. After what probably felt like an endless journey down what was often a dark and bumpy road, your detour came to an end. You had rediscovered true and reciprocal love. I was cheering for you then, when it was shiny and new, and I’m still cheering for you now that he has become home to you. I only wish that I had a chance to meet him, to see how happy you are together and share in your joy.

It wasn’t really a boy, or even that stupid argument that drove us apart. There are times when I replay that exchange between us, where we drove that wedge in deeply. “This isn’t about either one of us being wrong. I think we just have two very different ideas of what friendship means,” I said. “I agree,” you said. The metaphorical light at the intersection of our friendship turned green. You went one way; I went another. And that was it.

Only, for me it wasn’t. (I say it that way because I can’t speak for you, here.) This is where that article you shared moved me to tell you that I disagree so strongly  with the finality in that author’s writing! She takes a spin on “a reason, a season, or a lifetime” and mentions that to her, friendships are either for a lifelong bond or a lesson.

Here’s my spin, if you’ll consider it. Maybe true friendships are more fluid than we have allowed ourselves to consider them to be. Maybe they can be all of the above- reasons, seasons, lifetimes, bonds, and lessons- just not consecutively.

There are a million reasons why I’m better as a person because I’ve had you by my side as a friend. Even so, there have been seasons where each of us has needed more than we could offer to one another. Perhaps instead of being hurt by that, we could just consider it part of the cycle of life. To quote my favorite poem:

“After a while you learn the subtle difference between holding a hand and chaining a soul.”

It is true that as a season came to an end, we chose to travel different roads and grew apart. But who is to say that after seasons pass, our roads won’t converge once again, both of us wiser from lessons learned during time apart? Neither of us can predict the future any more than an old adage can determine whether or not we will have a lifelong bond.

More than anything, I want you to know that despite any impression you got from me, I don’t want our story to be over. You were more to me than a single season or lesson, and always will be. I will always speak kindly about you to my children. You were part of their lives, and they miss you, too.

Where we go, from here, I don’t know. I am thrilled that we’ve both grown enough, in ourselves, to exchange messages now and again. So many times, I’ve stopped just short of asking if you’d like to meet up to actually talk. Truth be told, I’m afraid, because the possibility exists that you might be happier at a distance-that I’ll make you feel awkward and place further strain on what relationship we do have.

Just please know that I didn’t address you in this letter as my “ex-best friend” for a reason. I still care, and I hope that somewhere deep down, we are still friends.

With love,

The girl in the other lawn chair on our lunch break.

Thank You For My Christmas Miracle

Humbled.
Awestruck.
Grateful.

 

Those are just three of a million feelings buzzing around my head and bursting from my heart at this small moment in time.

 

I spent over an hour with tears in my eyes, tonight, as I sat with my husband and watched our three children dance to Christmas music and decorate the tree. They were the tears of someone who was watching a Christmas miracle unfold before her.

 

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Had you peered through the window during this magical hour, you would have smiled as you observed three siblings, handing one another ornaments and taking turns hanging them. You wouldn’t have seen anything miraculous- just an everyday family having fun carrying out a tradition. But to me, that description in and of itself is a miracle!

 

 

“…watching our three children…”
“…just an everyday family…”

 

 

There was a point, not long ago, when my husband and I didn’t know if we’d ever use those words to describe a moment like this.

 

Had you peered into that same window one year ago today, you’d have witnessed a very different scene playing out in front of the very same tree. In that very room where two siblings decorated excitedly, a third sat off to the side, uninvolved and unaware. That third child had no idea what she was missing, and her family had no idea how to “reach” her. She lived in a world where she was perpetually lost to what was happening around her.

 

That lost child was our daughter Piper at three years old, just before she was diagnosed with Autism.

 

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To truly understand the miracle of seeing all of your children work together, you must first understand the heartbreak of seeing your own child, who was once such a bubbly, joyful baby, so disengaged during a time that is supposed to be magical and exciting. You have to recognize the countless hours of work that have gone into creating such a moment, and along with it, the people who have given of themselves to make it happen.

 

Over and over, I’ve read stories of parents who have found their “tribe” and until tonight, I didn’t realize that as a family, we’ve found ours. Right now, our tribe is the handful of incredible individuals who have made it their lives’ passion to helping our little girl. They are her teachers and her therapists, and I am immensely grateful for each of them.

 

From an outside perspective, one might say that they are paid professionals, doing their job. Piper is living proof that they are so much more. Consider the teacher who, after a particularly painful morning, when I left in tears after Piper kicked, screamed, and sobbed at dropoff, texted me pictures of her smiling face throughout the day, along with a beautiful quote. Next, consider another teacher, who slipped up and said “I love you” instead of “Goodbye” when I picked my daughter up for Thanksgiving break. Also, consider Piper’s therapist, who took time out of her day off to meet me for coffee, not to discuss Piper, but to simply be a friend.

 

These are people who work selflessly, celebrate life’s small victories with us, and make each day brighter. They aren’t just helping Piper. The “ripple effect” of what they do is enormous. Because of them, moms and dads witness true miracles. Brothers and sisters build true relationships and bonds. Grandparents are able to see their grandchildren light up with love, and their own children relax and enjoy small moments of immense joy, where there was once sadness and fear. That ripple continues to spread onward and outward, and in doing so, life gets better.

 

 

Tonight, I extend love and gratitude to our tribe. You have become family to Piper, and to us. I need nothing more to complete this holiday season. You’ve given me a true miracle- a gift that I will carry and look back on as our beautiful journey continues.

 

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