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.
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.