I watched you tonight during your dance class, sweet girl. Don’t take that the wrong way- I’m always paying attention while you dance. Tonight, though, as I sat on my side of that mirrored window, I watched you and got a glimpse into your little world. What I saw as I was watching evoked a myriad of emotions that I’m still trying to sort through, hours later.
Emotions in and of themselves are complex things. Trying to understand the reasons behind them is like peeling back layers from a ball of rubber bands. The outside layers are obvious enough to separate from one another. But as you get closer to the core, the process becomes far more daunting. The bands down there are so tightly intertwined, they almost seem to want to stay tucked away there in the middle, protected underneath the more superficial layers.
The more I think about my own emotions, the more confused I become. How is it that in 45 minutes, I can look at you and feel so many different things?
In one moment, my heart is swelling with so much pride, I truly feel it might burst. There you are, standing in a circle with twelve other little girls in your class, blending in seamlessly. You’re smiling, laughing, and going through the motions, right along with them.
Things shift then, and moments later, I’m so anxious that I have to remind myself to breathe. Your class is lined up against the back wall as each of you wait for your turn to try a new dance move with the instructor. You follow directions and take your place in line, but then, like every week, you find yourself in the mirror. The dance class has now become background noise to you. You’re busy dancing your heart out to your own music. I am not anxious for you. You are happy, and that’s all I want when I bring you here. I’m anxious for me, I suppose. I hold my breath, because I wait for a question or comment about you from another parent watching the class. We’ve been coming to class for four weeks now, and I’m pretty sure the other parents have figured out, or at least suspect that you have autism. Each week, the likelihood of anyone commenting on your actions probably decreases, yet I hold my breath and brace myself, anyway. Your turn in line comes. You try harder this week than ever before to mimic the instructor’s steps, and immense pride once again prevails over my anxiety. It’s amazing to see these transitions get easier for you each time you come.
Class ends, and you come out and hug me. As you remove the ballet slippers and replace them with your new”rainbow shoes,” a hint of sadness creeps in. It’s just you and me, now. The other parents are chatting about getting ready for kindergarten as they pack up with their daughters to go home. I’m not involved in the conversation, and honestly, that’s okay. I’m not here to connect with them, I’m here for you. What saddens me a little bit is that over the course of the past four weeks, I’ve complimented the efforts of their little girls. These other parents were here on week one, when you cried and wouldn’t even entertain the idea of wearing your new ballet shoes. They were here on week two, a particularly rough week, when you put on the ballet shoes, but were too overwhelmed to finish class. They’ve watched you adjust and overcome things that were obviously very hard for you. Why is it that none of them can reciprocate the compliments I’ve given their daughters by extending one to you? Something as simple as “Great work tonight Piper!” would make you so very happy. I’m sorry no one has reached out.
They’ve watched you, but they haven’t seen you, and that makes me sad. I wish they understood as you sit with me tonight, changing your shoes for the third time in 45 minutes, that you wore the same pair of bright pink Nikes with every outfit for nearly a year. Only in the past two weeks have you worked through the panic that the idea of new shoes has always brought you. I wish someone else here was cheering for you.
I understand that other parents might just not know what to say-to me, especially-and so they don’t initiate conversation. The problem is, their daughters are watching and learning from how their parents regard you. Many of them will model these very behaviors. Of any potential obstacle you could face, this is the most heart wrenching. The greatest source of worry and angst for me is the idea that because of your autism, you might be lonely. The pride I felt earlier as I watched you blend in wasn’t because I wish for you to be like the other girls. You are beyond incredible exactly as you are. My pride was a result of watching you be yourself, while also watching you truly be a part of something with other children your age. I want to continue to see you involved, and more importantly, included by your peers.
There are many more months of dance class. Hopefully, in time, the other parents will begin to really see you. Hopefully they will reach out. After all, a few of their daughters have begun to join you as you dance in the mirror. As it turns out, all four-year-old girls love to watch themselves dance.
Though I utilize my blog mostly to chronicle my family’s journey as it relates to ASD-Autism Spectrum Disorder- tonight, the Struggle Bus is taking a pit stop. Some part of my heart just needs me to put into words how precious my children, all three of them, are to me.
Perhaps I’m feeling sentimental because for the first time, today, all three of my children went off to school, leaving our home very empty and quiet. Maybe the lack of regular sibling arguments gave me some time to reflect upon the gifts my husband and I have been given. They are gifts, each one of them.
Some time ago I stumbled across an article online that highlighted twenty or so things a parent should say to their child to let them know how loved they are. When I see articles like this, I typically bookmark them with the intention of reading then later. A quick check to my “Favorites” shows seven pieces with similar content. Sadly, I would be willing to bet I’ve yet to read one. This is not because I don’t care, or they’re not well-written. In truth, it is because sometimes, I’m afraid my parenting skills don’t measure up to those of the person who took the time to write such a list. I’m often so exhausted by bedtime, those kinds of deep statements aren’t even a blip on my radar. On a normal night, I sing my youngest daughter a song, play a silly “jailbreak” game with my son, and spend a few minutes easing whatever worries are weighing on the mind of my oldest daughter, who is beginning to realize that life becomes much more complicated the older she gets. I tell each one of them I love them, and wish them sweet dreams.
When I don’t save those stories for later, I usually scroll through them quicky. I’m either looking for simple inspiration after a tough day, or hoping to find that I’m already saying some of the “right things.” In any case, I came across a simple, yet profound statement in one such article, and it really struck a cord with me. Because I don’t want it to lose its significance, I save it for the toughest of parenting days- those where it doesn’t seem like my children and I will ever see eye-to-eye. No matter how that night ends, I tell them this:
“If I was given a choice- if I could pick any child in the world to be my child, I would pick you, every time.”
Sometimes, I am answered with just a hug. Other times, one of them will ask me why I’d choose them. I embrace those opportunities to list for them a reason or two that I think they are wonderful. Tonight, though, I want to make note of just how much I adore each of them.
You are my first child, and for so many reasons, that’s a hardship in and of itself. Being first is kind of like being a guinea pig. You were the first to give me the gift of being a mother, but with that, you were, and in many ways, will continue to be the subject of much trial and error. You are our child of “firsts.” The first we had to potty-train, the first we had to help learn to read and write- the first to go to school. We don’t know anyone at the school, or the politics, so we often learn of activities and programs you would have loved after we’ve already missed out on them. Our lack of experience has often come at your expense, yet you don’t harbor resentment about those things. You accept our many apologies and more, you continue to love and trust us unconditionally. What a treasured gift that is!
You’re unbelievably intelligent. You’re so intelligent that I often worry about how I will keep you with you as you grow older. Your mind is creative and amazing. I know simple answers are not enough for you now, at nine, and certainly won’t be enough in the future. You make me realize I need to stay informed to be able to answer your questions. In doing so, you challenge me and make me better.
You’re incredible. When you love something, it consumes you and you put all you have into mastering it. At eight years old, you joined a running team and motivated me through a 5k in just 31 minutes. I was there to support you, and you supported me. Right now you want to be an Olympic runner. I have no doubt you can be. Your spirit and inner fire shine so brightly. I look up to you.
I know life isn’t always easy, but you’re blossoming into a young woman with incredible character. You do what is right, and are just plain fun to talk to. I just love the child you are!
You make my heart melt. You radiate love. You live to give it and receive it. Both are so beautiful to me.
You’re a crazy, rambunctious boy, but also one of the most easy-going souls I’ve ever known. Because of this, you give the family balance. You’re happy as long as we read and play with you. Everything else is irrelevant. That kind of pure, simple joy is so underrated. We are so lucky to have this in you.
You are kind. You are drawn to younger children and babies. From watching you as you’ve grown, I now understand it is because it brings you great joy to make them smile and laugh. You want everyone to be happy. At times, you exhibit empathy far beyond your years. God-willing, you will make an incredible husband and father someday.
You accept everyone and treat each individual you meet with care and compassion. I could not be prouder of you for anything.
You exhibit strength that you do not even know you possess. It is nothing short of magical to see you clear the many hurdles you face at such a young age.
You have been my greatest teacher. You’ve taught me to focus more, as a parent, on the PEOPLE my children are, and not on the timeline of their accomplishments. You’ve taught me to throw percentages and statistics out the window- they are merely numbers. You’ve shown me the beauty in celebrating the little things… And that the little things are what truly matter. You make me see something beautiful in every day.
You have taught me how to look and listen- that communication comes in many forms. And because it didn’t come easy to you, your voice continues to be one of the most beautiful sounds I have ever heard.
So, to my children- you are loved. No other children could teach me the things you have. No other children could fill my heart the way you do. It doesn’t matter if, at the end of the day, we saw eye-to-eye or not. I love you, I’m incredibly proud of you and I’d pick you, every time.
All my love,
Happy 4th birthday to Piper. If I had to use one word to describe you, it’s “light.” Your bright light shines wherever you go. You are my sunshine, and my greatest teacher. I love you!
One of the most disheartening things about “growing up” is the learned ability to see things for what they really are. It’s a gradual process. Somewhere, in time, the pretty pictures we painted in our minds as children fade away and are replaced with reality. The pictures which reality paints aren’t easy on the eyes and are even harder on the mind. Reality’s pictures make us introspective; they make us question parts of our lives that we hadn’t considered as children.
Reality, being the bitch that she is, asks questions that demand answers. The journey of finding those answers strips us bare. It is in the adult journey to discovery that the heroes of our childhood are forced off of their pedestals and exposed for what they are- humans with real flaws.
Sometimes, reality is just plain cruel. Sometimes it forces you to draw up an entirely new picture of your family in order to find yourself. This is my current position in the good old “Game of Life,” and it is here that I find myself in the throes of a love-hate relationship with adulthood and reality, simultaneously.
My life, as a whole, is in a state of perpetual change. I don’t think my feet have been on solid ground since my youngest daughter was diagnosed with autism a little under a year ago. I’ve come to embrace this new, unsteady terrain, and the challenges that come along with it. I’ll even reach far enough to claim that this very lack of stability has granted me the clarity to prioritize my life.
For nearly a year, I stretched myself as far as I could go to meet the demands of my daughter’s treatment while working full time. I truly believed that I had everything under control. I’m not sure at what moment it happened, but I found enough clarity to learn a couple of very important lessons. First- I am not Gumby- I can only stretch so far without causing permanent damage. In an effort to meet life’s demands, I had stretched myself to the point that I was becoming invisible. I was so exhausted, I had become a shadow of my former being. Second- I was far from having everything that was important covered. My efforts to be everything to everyone had left me exhausted and, over time, had robbed me of my spirit. Consequently, I had begun to rob my husband and children of the wife and mother they needed, too.
In that moment of realization, I recognized that I couldn’t sustain a lifestyle that came at such a great cost. My husband and children weren’t getting the best of me. I hadn’t seen my own parents in a year. My father has battled and beaten cancer twice in my adult life, experiences from which I’ve learned that life can be fleeting. My children needed to see their grandparents to truly know them, and I felt that I needed to be surrounded by my family to feel whole again. My husband gave me his blessing to resign from the job I loved- a gift that gave me back time to be truly present for our family. The first thing I did was plan a long-overdue trip home. Unbeknownst to me, reality had planned a visit of her own.
Even as an adult, I haven’t outgrown my desire to make my parents proud. As we buckled our children into the minivan at 5AM, I felt like Dave and I had so much to be proud of! I was excited beyond measure to share Piper’s progress with my mom and dad. I couldn’t wait until they saw that Cameron had learned to read this past year in Kindergarten, or for them to be blown away by what an insightful young lady Kaydence has become at age nine. The closer we got, the more excited I became. I just knew they’d be proud!
I don’t know what I expected, but what I do know in hindsight is that, deep inside, I hadn’t outgrown the need for my parents’ affirmation, either. Reality knew, though. I wish she would have warned me and spared me the heartbreak of feeling completely deflated.
Fair or not, we all hold people to certain standards. After spending a week back at home, one which I had built up so much in my mind beforehand, I can say with brutal honesty that I didn’t feel like I measured up to the standards my mom and dad set for me.
I grew up with “superwoman” for a mother. That’s the picture I painted, with help from everyone around as they always marveled at her ability to do it all. To her credit- she put more effort into meeting our physical needs and making sure our bellies were full of delicious home-cooked meals than anyone I’ve ever met. She also managed to do an incredible amount of work around the house to keep an impeccable home, despite having four children. Perhaps by these standards, I have failed her. I could feel her displeasure with me as I relied heavily on my husband to assist me in completing the very tasks that she did perfectly by herself as a young mother. “He’s doing too much,” she told me. I know she that meant that he should be resting more after having back surgery in April, but still, those words stung. “You’re not enough,” is what echoed in my mind every time he helped me from that point forward.
I still can’t figure out where I have come up short in my father’s eyes. He didn’t articulate it, but I felt it. He was my “coach” and my biggest fan. He made a spiral- bound book of my athletic achievements that, if you don’t know better, reads like I was an Olympian! He taught in a different school district than I attended, yet somehow never missed a single high school softball game. He challenged me, sure, but he cheered the loudest. When did his voice fall silent? Is it that his own challenges have exhausted him, or have I let him down somehow? The pretty picture I painted doesn’t match reality, and this leaves me confused and sad. Do I no longer offer anything worth celebrating?
I said before that reality demands answers, and it is those answers that help us find ourselves. I’ve had a few days to sort through my emotions, and I think I’ve found the most important answer.
All I can be is just me.
My mother is a wonder of her own right- the most capable woman I’ll ever meet. When I said she did it all-I was being literal. I never did a single load of laundry, ironed clothes, or vacuumed while I lived under her roof. In her eyes, no one could do it like she could. She recognized that, and did all of it herself. As a result of her hard work, I was ill-prepared to do those things. Held to her high standards of keeping house, I will never, ever measure up. The thing is- this doesn’t make me a failure as a mother!
Though I so badly miss my dad voice his pride, perhaps I need to stop looking for it. His pride carried me through my childhood years. Maybe I reveled in it for too long. It could be that I became so dependent on his praise that I question myself in its absence. Perhaps he’s not belong aloof. He could just be enjoying the view from further back in the audience. The absence of affirmation, while it confuses me, doesn’t define me as a failure.
To the contrary, I think I’m doing okay as a mother. This is not in spite of my own parents. Their example shaped me as I was a child drawing pretty pictures, and continues to shape me as reality teaches me about imperfection and grace.
What I am is the mom who gets down and dirty. I may not be in a hurry to clean it up, but I enjoy the heck out of making a mess with my children. I am the mom who takes shortcuts, but not because I’m lazy. I take them in order to be present.
We got home at 5PM, yesterday, after ten hours in the car. My mom would have unpacked everything, put the suitcases away, and whipped up a meal without ever stopping to rest. I did none of that. I ran to the store and grabbed a handful of Lunchables. I put my kids back in the car, and my husband and I took them to the pool before it closed for the night. They didn’t even eat until 8PM, as we were on our way to celebrate National Ice Cream Day. The bags remain unpacked. My kids were filthy, exhausted, and happy. I am not the mother that my mother was. I never will be. All I can be, is just me.
The truth is, I can’t expect my parents to understand the challenges I face as a mother. I can’t expect them to know, without being told, that there is no day-by-day in the life of our little family. We live from one situation to the next, and are often overwhelmed, but we’re learning. Traveling with a child on the spectrum is overwhelming because change is their kryptonite. While I have much to be proud of, I was often tense and tired during our visit. My parents certainly didn’t witness my finest performance as a parent. They did get to spend quality time with their grandchildren, the stars of the show. I can tell you this-their grandchildren painted some beautiful pictures in their minds of those memories.
Listen up, and please listen carefully. I have something important to say.
Or, don’t listen. Don’t read any further, if you don’t want to. Maybe you don’t care what I have to say, and that’s okay, too.
I’m speaking to all of you, though.
I’m speaking to all parents to children with autism who have chosen to share your journeys. I’m reaching out to all of you, who, after the day has long since taken every drop of energy in your reserve, dig even deeper to live the day all over again just to let someone else know they’re not alone. What a profound, selfless gesture it is to do so! Your unabashed honesty brings clarity to so many, yet you face scrutiny from other parents for not being “real” enough. I know this, because I’ve been there, repeatedly.
“Too cute and sugar-coated” was one bit of feedback I received on a recent piece. “… don’t downplay its seriousness with hearts and rainbows” was another.
I accept that what I write will not resonate with everyone, but this was just disheartening. With that in mind, I’m going to offer an explanation in regards to the manner in which I choose to convey the messages I share. In doing so, I’m speaking directly to those of you who have chosen to pass judgement.
Just as my child on the spectrum does not fit into a particular mold, neither do I! There is no “one size fits all” manual for maneuvering through a life that includes autism. Therefore, there should be no expectation amongst parents in the same community in regards to what is deemed a realistic or reasonable outlook for a child’s future!
My daughter and I have a lot of days that are less than stellar. On these days, I have moments where I cry, alone, because I feel completely inadequate. However, hidden between those tumultuous moments have been some real moments of pride, inner strength, and pure joy. I write about these days, these experiences, as a whole. I don’t omit reality and write fairy-tales as many have claimed. I do deliberately choose to focus on how these experiences have made me stronger and more capable. If that’s not your cup of tea, I accept that. What I do not accept is the notion that I’m misguided, because the tone of my writing is too positive.
I have three children. Someday, they will undoubtedly plug their names, or mine, into a search engine. I want the results of that search to show them how much this experience has taught me as their mother.
The writing I choose to share is not “too” anything. It is my own. Writing is therapeutic. Just as it can cleanse the soul to vent about a terrible experience, it can build confidence to write a positive message. I share my journey because I believe the lessons I learn may motivate others to push through. There’s nothing sugar-coated about it. My daughter inspires me, and I’m excited to watch her grow.