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.