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.

I Will Choose My Children, Every Time

Once again, I find myself standing at the corner of one of life’s daunting crossroads. The past year has consisted of navigating through one uncertainty after another. During this time, my youngest daughter, Piper, was diagnosed with autism. In that moment, everything changed.
Through her diagnosis, I became everything I never was, or, at least, everything I had never realized I was capable of being. I became vulnerable. While before, I was never one to ask for accommodation at work, I suddenly found myself needing to ask, often, for time off to facilitate her care. I became a master of research. If there was a resource available to help her, I found it. Most importantly, I became an unwavering advocate, not just for Piper, but for myself and my family as a whole.
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Just months ago, I shared this piece.  At the time, it was an honest depiction of an environment where I was embraced with support and understanding. More recently, though, I’ve come to recognize that understanding and support sometimes come with a limit, and often at great personal cost.
 My employer has done everything by the book in regards to intermittent FMLA leave for Piper’s care. I have never been denied the time I need for any of her appointments, assessments, or therapies. Yet, somehow, I have fallen into a grey area in terms of policy as it relates to work/life balance.
It is completely legal for an employer to enforce a policy that requires the employee to exhaust all hours of paid time off before they may take any unpaid FMLA leave. However, when that same employer additionally enforces a policy that prohibits any employee from taking unpaid personal time off, the outlook can be bleak to a parent with a child who has special needs.
 I am incredibly fortunate that even though Piper has autism, she is a healthy, vibrant child. The flip side, though, is that her condition has no time frame or “end date.” She will need therapy for years, if not a lifetime. Until she is an adult, there will always be visits to the doctor and IEP meetings. The reality of the situation is that in my current position, I will work indefinitely and never be able to take time off with my family.
 I have a tremendous amount of professional respect for management at my practice, so the following is not a personal statement, but a generalized analogy: Too often, the people in positions to make such policies have no trouble coloring within the lines. Every color has its place, and they all blend together to make a beautiful, complete picture. It flows, and it makes sense…to them. To people like me, daily life is like trying to color one of those intricate adult coloring books with a fat, awkward crayon intended for a toddler. We do the best with what we are given, but can’t possibly always stay within the lines, as they are defined.
What ultimately brought me to this crossroads, though, is everything I am missing. Piper is not my only child. Her older brother and sister need me. I am their Mommy, too. They see me taking Piper here and there, and although they are scheduled appointments, at ages 6 and 9, they don’t perceive it that way. They see Piper getting more of me, and I see it hurting them, deeply, when I can’t take additional time off to be present for the things that are important to them.
Ultimately, I had to make a choice. While the thought of putting my career on hold and losing an income was daunting, the decision was a no-brainer. When asked to choose between anything and my children, I will sacrifice whatever I need to. I will choose my children, every time.
So here I stand, at this crossroads, and I’m taking a huge leap of faith. I’m counting my blessings, and I’m  very thankful to be in a position where putting my career on hold is possible. So many parents can’t make this choice, and I want those parents to know- I hear you. I see you. My heart goes out to you. Don’t ever stop advocating for yourself, or your families. Someday, our collective voice will resonate loud enough that none of us will have to choose.

A Child Doesn’t Need Words to Say “I Love You”

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(This post was originally featured on The Huffington Post)

Another Mother’s Day has come and gone. My children have long-since drifted off to sleep, and I’m quietly reflecting on the many ways they brought joy to me today. Some of this joy was the result of intentional acts of kindness, including a beautiful bracelet made by my oldest daughter, and a heartwarming “All About Mom” book, filled in by my kindergarten-aged son.

These were gifts that my children made in advance and gave to me with great anticipation. They knew it was to be a special day for me. From the moment their feet hit the floor, they were active participants on a mission to make Mom feel extra-loved! Their mission was a great success, and I took every opportunity I had to let them know it.

My youngest daughter, on the other hand, has no clue what Mother’s Day is, or that it even exists. She’s three years old, and on the autism spectrum. To her, today was just another day. Still, she, too, managed to make me feel loved beyond measure.

There are so many ways in which every child on the autism spectrum, verbal or non-verbal, is capable of saying “I love you.” What they need is for us to realize that we can listen with more than just our ears!

Many moms of other children with autism have opened up to me and have shared their stories. I’ve heard the heartbreak in their words as they have described how it feels to know they may never hear the voices of their non-verbal children. It’s humbling, to say the least. I’m incredibly fortunate that my little girl is able to speak. I have heard her little voice say “Goodnight! I love you!” From mothers who don’t have that luxury, I have learned that children with autism express love in a multitude of ways, often without ever uttering a word.

When a child with autism has a great day, socially, yet breaks down the moment she is in the safety of her own home, she is saying “I love you enough to let you see this. I feel safe with you.”

When that same child clings to you and sobs over the most seemingly trivial change in routine, she recognizes security in you. She isn’t just being difficult or finicky. She is saying “I love you, and I’m not letting go, because right now, you’re the only one who I know can make it better.”

When a child with autism smacks you in the face as you pretend to cry during play, he isn’t being cruel. He is expressing distress over seeing you distraught. He is saying “I love you, and I can’t stand to see you sad, Mommy.”

Yes, my daughter can speak, but she also does each of the things mentioned above. Instead of being hurt by her behavior, I’ve learned that I need to look beyond the surface and listen to what she’s telling me with her actions. They’re all rooted in love. This is not always easy to do. I’m far from perfect and often become frustrated during these outbursts, but I am learning to hear the things she’s not saying in times like these.

My daughter speaks, but she’s not yet able to understand the significance of days like today. Sure, she takes cues from her older siblings and repeats the phrase “Happy Mother’s Day.” She is intelligent, and knows that these words get a positive response, but she has no idea what they mean.

Tonight, her actions said “I love you” incrementally louder than any words she’s ever spoken.

I put a different spin on Mother’s Day, this year. Since my children are what make me me “Mommy,” I gave each of them a gift- a small wooden photo of them with me. At bedtime, I found my youngest daughter in her bed, snuggling with hers.

In so many situations, you can feel an overwhelming expression of love without having to hear it expressed verbally. There is no greater feeling than looking at my little girl and knowing that I am loved and adored, just for being me.

 

Faith and the Waiting Room

Today, the Struggle Bus is taking a detour and stopping at a new and (thankfully) foreign place. I bring this update to you from a hospital’s surgical waiting room.

Just a few minutes ago, I kissed my husband goodbye and watched two nurses wheel him back to the operating room. I should see him in about three hours’ time. At 34 years old, this is his first surgery. In an effort to keep the mood light, I teased him as we waited in the holding area- when we do something in this family, we do it with style! It couldn’t have been his tonsils, or even his gallbladder…he had to go all out and go for the spine! Years of being rough on his body as a teenager through athletics and other crazy adventures have caught up to him, and without getting technical, a disc or two in his spine have caused him around-the-clock pain for the past several weeks. He has a phenomenal surgeon, and the surgery, a Microdiscectomy, is certainly not the worst thing he could be facing. Still, I’d rather be pretty much anywhere else right now and I’m sure he’d concur!

At 34 years old myself, I’ve never been in this position. I’ve never been alone in a surgical waiting room. David’s case has been given a number, which it appears on an LCD screen now and again. The number is color-coded to correspond with the progress of his surgery. At the moment, this number on a screen is the only real connection I have to the man I love.

A minute or two ago, a page came across, and I abruptly stopped twirling his wedding ring around my thumb.

“Will a member of the Smith family please approach the desk for consultation?”

I felt my heart speed up instantaneously. He’d only been back there for fifteen minutes! What could have happened already? I approached the desk, and the woman behind it simply stated “The surgeon just wanted to let you know he’s begun operating, and everything is going fine.” I stood in silence, very awkward silence, until she said to me “That’s all, honey. You can go back to what you were doing”.

What I was doing was just non-productive worrying. I decided putting my thoughts into words would be better than continuing to count the minutes he’s been back there.

I looked around me as I walked back to my seat in the corner, and observed people in what appeared to be a variety of different emotional states. Some are sleeping. Some are staring at the LCD screen. Others, like me are on their laptops, probably making a similar effort to escape from the reality at hand. One thing we all have in common is the momentary look of panic when our names are called. I have my back to the door, because I don’t think I could bear to see anyone get bad news.

Simultaneously, I’m glad I’m alone and wish that I wasn’t. Notoriously a talker, I can honestly say that this is one time where I’d rather not have to make small talk with anyone. However, I know it must be difficult for David’s mom not to be here waiting, as well, so a part of me wishes she was.

I feel strangely calm, at this point. This is out of the norm for me. Anyone close to me can attest to the fact that lack of control over a situation is not my strong point. Perhaps I’m in a better place because the last several months have been a repeat demonstration of unpredictability. Furthermore, perhaps I’m just having faith.

A few years ago, I got this small tattoo on my right wrist:IMG_20160427_140117
When the tattoo artist was about to begin, he asked me if I wanted the writing facing me, or facing outward. Without hesitation, I told him I wanted it to face me. Its message was intended to serve as a reminder to me on days when the struggle seemed overwhelming. Today is such a day.

I’ve been asked many times “What does it stand for?” Or “What does that mean to you? Is it because you work in healthcare?” Yes, part of it is fitting due to the nature of my profession. But the message that resonates in me is as follows: As long as your heart is beating, and you can find it within yourself to have faith, beautiful things lie ahead.

For me, the beauty in this stressful and scary day is the opportunity to see my husband live free of the pain that’s taken over his life as of late.  I’ve probably said before that one of the most heartbreaking feelings is to see someone you love struggle. Over the past few weeks, I’ve watched pain frustrate and exhaust him. He’s never complained; it’s just not his nature. But his quality of life is going to improve incrementally after this surgery.

For the next few hours, I know I’ll continue to be nervous. I want nothing more than to see him again right now.  I know this is for the best and I will continue to have faith. For the record, I don’t think “faith” has to have a religious connotation. It can be as simple as just believing in something, some meaning bigger than oneself.

To anyone who has reminded on the Struggle Bus this far into the detour, thank you for affording me the chance to put my nervous energy to use!