In my other life, I am a dental hygienist. You know – my other life – the life where I have intelligent conversations and move about my environment as I choose; the life where my work is appreciated and rewarded and my ideas are valued and considered – well, most of them anyway – there is that flossing idea I keep throwing out. . . . Anyway, the point is I exist as a relatively, “Normal,” human being in my other life.
So in this alternative existence as an intelligent being, I have landed the grand prize of jobs – an office that I genuinely love working in. I love everything about it; it is close to home; it has the up-to-date equipment and tools that make work easier; and the staff is upbeat and friendly. It is where I go for fun in this twisted, backward life of being an autism mom.
An autism mom – is that who I am? It has certainly become my primary identity. Inevitably, when people ask about me, Luke is where the discussion lands. This has become a challenge as I meet a lot of new people in my work. A lot of people who really do not want or need to know about the challenges of raising a child who starts out every morning with a new, creative way to drive me insane (just finished cleaning the carpet after this morning’s redezvous with a bottle of dish soap), but again and again, I find myself oversharing my life. Last week, my dentist innocently asked how my evening had been. “It was basically Hell,” is what I wanted to say, but I held back and offered a tempered version. “Not great. I sat outside Luke’s bedroom door until 1:30 am while he had an epic meltdown.”
I know these honest responses are not really what people want to know when they ask how your night was. I know I should come up with an upbeat response that does not leave people sorry that they asked, but autism dominates my life. I live it and breathe it in some form all day every day. I escape it once or twice a week only to find myself talking about it throughout my work day. How do I express anything about myself or my life without defaulting to autism? It seems impossible to offer a genuine response otherwise. I suppose I could offer up a shallow, doing-fine answer that would better satisfy the social expectation of the question, but if you want to know the real me, you will also know about autism.
Am I Luke’s autism? It is certainly a major descriptor, but I am much more than autism. I am momma to six kiddos. I am more than just an autism mom, I am also just a mom. I love music; I sing and play the piano for fun. I “teach” piano lessons to one student who now plays better than I do.
I like creating things. In my pre-autism life, I was an avid scrapbooker. My oldest three kids have fun books to look at documenting their childhood years. Even Luke has pages of his infant years that are beautifully painful to look at now as they express all the hopes and dreams I had for my adorable baby boy. I like to learn new skills. At the time of Luke’s diagnosis, I was trying my hand at sewing. I even made myself a shirt that was wearable.
Luke’s diagnosis has forced me to change, but I have found new ways to satisfy my need to create. I crochet – a hobby developed largely in response to Luke’s autism because I could carry it with me and work on it as I waited for Luke during therapy. I am learning to draw – also an autism-driven hobby. Luke loves to find pictures on the internet for me to draw, and then he colors the picture. I can whip out a mean air mattress or vacuum, but my skills with the John Deere combine with a wheat header are still in the early stages of development. I certainly wouldn’t identify myself as an artist, but it is becoming a part of who I am.
Learning to be myself amid the constantly changing demands of autism is a battle – a battle that I just couldn’t fight for a long time. I have felt trapped by the limitations autism has put on me as my own person, and I am tired of it. I am ready to begin to find myself again.
Autism is my life, but it is not me.