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.

How Facebook Made Me Realize I’m Not A Superhero

A few years ago, my husband bought a tee shirt that read “May your life someday be as awesome as you pretend it is on Facebook!” We laughed, and laughed.

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Just about anyone with an active social media account can relate to that phrase, because we all have one or two friends whose posts seem out of touch with their actual lives. I still see the humor in the statement on that shirt, but lately, the truth behind those words really resonates in me.

Since joining the special needs community, my social network has grown exponentially. In an effort to find education and support following my daughter’s autism diagnosis, I have become an active member of several virtual communities. Where, before, I primarily used Facebook as a means to exchange casual updates with family and friends, now, I find that I utilize most of my time online engaging with other parents of children with special needs. These exchanges via social networking were what inspired me to share my journey through my blog.

I have committed myself to being very candid about the experiences I share. I’m open in sharing about the struggles my family has faced; I even named my blog ‘Driving the Struggle Bus’. However, there is underlying positivity in nearly everything I write. I use my voice to show others how each challenge has been an opportunity to learn more about myself, and a chance to find strengths I never realized I possessed. While my experiences are unique, my point of view is not. Most of the other parents I’ve connected with in special needs communities utilize social networking the same way-to encourage one another and build each other up.

Sometimes, though, we build each other up to a fault. When members of our communities express self-doubt, we rally together to remind them of the countless ways their struggles have made them stronger. While such vehement support is desperately needed at times, it can cause us to embrace a sort of “superhero” identity. When fifty people regularly remind us that “we’ve got this,” we tend to believe them.

The problem is, we’re not superheroes. We’re parents, and all parents, while they have children with special needs or not, are human. Sometimes we don’t “have this.” Sometime’s it’s all we can do to clean up and get our children to bed before we break down and cry. We spend so much time telling one another to “soldier on” that we start to forget that it’s perfectly acceptable to break down.

The other day, scrolling through my regular news feed on Facebook, I broke down. I dropped the façade of the superhero mother who is completely at peace with her child’s autism, and realized I was human.

All it took to bring me back to reality was a simple post, another mom describing, in detail how articulate her daughter (who is the same age as mine) is. I became angry and judgmental- the very things I have consciously tried to overcome. I said to myself “All she ever does is brag about her perfect life, and how advanced her daughter is!” I unfollowed her, because I couldn’t bear to see any more.  I texted a mutual friend, who commiserated with me. It’s what I needed, at that moment. I needed to realize that even though my daughter is amazing and I accept that she has delays,, sometimes it’s going to hurt like hell to see that other children her age function on a whole different level.

Once the moment had passed, I reflected about the raw emotion that post brought out in me. The mom who shared it isn’t one of my closest friends and I don’t see her regularly. It was easy for me to use her as a scapegoat. Was it fair of me to do so? Absolutely not. I recognized that, while the majority of her posts are centered around her daughter’s accomplishments, her intention was not to brag. She was proud, just like I am of my daughter’s achievements, which I frequently share.  It’s all about perception. 

What I gained from this experience was simple insight. Facebook is merely a highlight reel of one’s actual life, and should be viewed as such. In failing to remember this, we are approaching it defensively and inviting others to offend us. A person is no more at fault for sharing her daughter’s accomplishments than I am for blogging about my struggles.