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.

All I Can Be is Just Me

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.

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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.

Sorry, Not Sorry- There Is No “One Size Fits All” in Autism Parenting!

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.

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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.

‘Mommy, I Read That There is No Cure for Autism’

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It’s not unheard of for my oldest daughter to worry. It’s actually quite the norm. She is nine years old and incredibly bright and insightful. These qualities seem to come with a certain degree of personal cost, though. She’s easily overwhelmed and worried by things that wouldn’t even register as a blip on the radar for a typical pre-teen. I’ve spent many nights trying my best to calm her fears as she’s sat in bed, worrying about things like the Ebola outbreak and acts of mass violence in school. So, the other day, when I sensed her anxiety and asked her to tell me what was on her mind, I wasn’t expecting her answer to be so deeply personal.

“Mommy, I read in a book that there is no cure for Autism. That makes me really sad for Piper.”

For a moment, I was at a complete loss for words. My silence seemed to deepen her sense of worry, and she followed up with “Is that true, Mom? Is she going to be okay?”

Before I could find the right words, my husband carefully explained to her that autism is not a disease, and should not be viewed as such. More importantly, he assured her that Piper is, and will continue to be just fine. This seemed to satisfy her for a moment, but the proverbial wheels were turning. A few minutes later, she pressed us further.

“If it’s not a disease, then what is it?”

By now, I’d recovered enough from my thoughts to add to the conversation. “People who have autism don’t need to be cured, Kaydie, because there is nothing “wrong” with them,” I offered. “They just experience and process things differently. Instead of searching for a cure, or a fix for something that isn’t broken, there needs to be a greater effort to understand how people like Piper see the world. Then, we can learn to relate and communicate in a way that everyone understands.” I went on to explain that Piper spends so much time in therapy not in an effort to be cured, but rather, because she was having difficulty showing and telling us how she was feeling. I did my best to explain that helping Piper express her thoughts and feelings is an important part of understanding Autism, as a whole.

I hoped, in that moment, that this was enough of a learning experience to ease her anxiety over her sister’s future. It seemed to be. She went back to watching the movie she’d been watching with her siblings, seemingly satisfied with the conversation.

I was the one who was left exhausted and saddened by this brief exchange. Even though campaigns for autism awareness are everywhere, this conversation left me feeling like we’re fighting an uphill battle. Where, as human beings, are we getting this so wrong? My nine-year-old is a very literal thinker, and therefore asks questions about things that don’t make sense to her. How many other nine-year-olds are reading the same literature she read? How many of them stumble upon misinformation like this, take it at face value, and view autism as some kind of incurable disease? If anything scares me about Piper’s future, it is this type of mentality.

Perhaps some of the efforts to raise awareness are misguided. Is it possible that we are focusing so much on educating this generation of parents that we are forgetting that our childrens’ generation needs educating, too? As parents of children with autism, we are a community with a voice that is getting collectively louder and in doing so, gaining much needed attention. How, though, can we expect our children to be the next generation of advocates if we are not enabling them to understand, as well?

If there is one thing I wish people would stop getting so wrong about autism, it is the notion that those who have it are “suffering” or somehow broken. I truly believe that it’s time we re-direct our call for awareness to include our young children. Equally if not more important, we must reach their classmates with no firsthand exposure to autism. If there is a lesson to be learned, here, it is this- It will be far easier to plan carefully and to lay a foundation which educates children correctly from the beginning than it will be to try to change their mindset later in life. We’re currently fighting our hardest to break through the barrier of preconceived notions about autism. If we don’t give our children a better starting point, we will never progress past this point, ourselves. We will merely pass along to them the same obstacles we are fighting so hard to overcome, today.

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.