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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I Wish Everyone Could See You Like I Do

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?

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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.

I’d Pick You, Every Time

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.

To Kaydence,

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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!

To Cameron,

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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.

To Piper,

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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,

Mom

We Don’t Have to Agree to Be Supportive

“Those who live in glass houses should not throw stones.”

That simple, poignant statement is a life lesson about transparency-defined as being free from pretense or deceit, or to be readily understood.

No matter how divergent our journeys to this point have been, each of us has, at some stop along the way, learned this lesson. We’ve learned it enough to recite it, but we’ve largely failed to learn from it.

 When we cast stones from our glass houses in an effort to reveal perceived faults in others, we expose our own flaws. In the end, our homes, our safe places, are shattered.  No community remains. When our communities are compromised in this manner, we’re forced to make a difficult choice. We must either move on to find a new safe place, or rebuild. Those of us who choose to rebuild homes within our community might attempt to learn from our mistakes by using a stronger material, like bricks.

The problem is that, eventually, we will have to face another painful lesson. Our efforts to rebuild with this stronger material only serve to isolate us further. Brick walls don’t build community any more than throwing rocks through glass.

At this point, you may be asking yourself how this pertains to autism.  Consider for a moment one of the many virtual communities for autism support. That community is supposed to be a safe place  where we can feel at home. It was created with the intention of being a place where we are comfortable to discuss the challenges autism has led us to face, as well as our triumphs. It was designed to be a place to spread awareness with the hope of creating a better future. Additionally, it was intended to be an environment free of judgement, free of casting stones.

 Just as you can’t assign autism one generalized definition, you can’t successfully build a home with one material. Glass, alone, is too weak and leaves us overexposed. Brick, alone, creates only a barrier and blocks our channels for true communication.

In making the conscious decision to share our true selves in a virtual community, we put a lot on the line, emotionally. Many  who contribute to these communities are sharing their children’s circumstances, as well. It’s painful when someone judges us as individuals or parents. It’s excruciating when someone shatters the glass, and passes judgement on our children. When we resort to building brick walls out of fear of being shattered, we lose the very transparency that makes our communities, our safe places, so valuable.

When we search the meaning of a word in a dictionary, it’s common to find a multitude of definitions. We accept those differences at face value. We don’t become angry or judgmental! Why, then, are we unable to accept that, just as singular words have many different meanings, autism plays very different roles in each of our lives? Why have we begun to approach those in our own communities so defensively?

The bottom line is that we don’t always have to agree to be supportive. I’m not suggesting that we live in glass houses, but I do think it’s time that  we consider our differences to be merely varied perspectives, not flaws. There is so much to be learned in our community. We have, at our fingertips, a wealth of knowledge and a broad enough perspective to create an immensely positive impact on society!  However, we are currently creating our own roadblock. We cannot learn from one another from behind brick walls.