Month: June 2016

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

~ drivingthestrugglebus ~ Leave a comment

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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

~ drivingthestrugglebus ~ Leave a comment
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.