To my tween daughter with Autism,
It seems like just yesterday we skipped gleefully hand in hand across the paved streets to another doctors appointment. I never understood your excitement or why you turned every aspect of the medical profession into an obsession. But at the time, I just knew it was far better than the blood curling screams of a frightened child refusing to step foot in an another doctors office. I often joked about how nice it was to actually make our frequent doctor visits a rewarding experience, especially when other kids usually dreaded the sound of the nurse calling their name back to a room full of scary instruments. But not you. Instead, we skipped, we laughed and giggled almost joyously when we heard your sweet name being called from the corner of a busy waiting room.
When I first heard your diagnosis of “Autism” It wasn’t a word that shook my world or struck me down with fear. Instead, at the time, it was almost a sigh of relief after endless tests, what ifs, and the fear of a life threatening illness. I didn’t know a lot about “Autism” I was only slightly aware of the stereotypical association with “Rain Man” or “Mozart”. I didn’t know there was a spectrum, or that you would be on the low end of it. I never realized that your fascination with music or clocks wouldn’t turn into a genius trait that you would one day impress the world with. No, you never seemed to understand the concept past the confines of your wondering mind. You couldn’t yet speak, and your steps were still slightly unsteady after years of physical therapy that at one point rendered hopeless. We had just received a pamphlet on wheelchairs when you took your first steps, with braces to support your legs, you walked out into a world that once again offered hope. Then there were words that seemed to frustrate you, words you couldn’t find, so you would throw yourself on the floor unable to express what came so naturally to everyone else. But as years passed and with hours of speech therapy, you soon spoke in three word sentences.
I dreamt of the day we’d go out for ice cream and we’d laugh over the cold stickiness lefttover on your nose. But it would be several more years with a feeding tube and weeks of throwing up what your body refused, before one day you slowly began to take risks. The day you found delight in a McDonald’s cheeseburger.
I laughed a lot then, I also cried plenty of happy tears. But there were also times I cried tears of sadness and guilt, afraid for what you would have to endure as your youth began to run out. I worried about the words of others, I was afraid of what you might feel. I also found my own self pity, as I thought about all the things mothers and daughters do. I wondered if you would ever wear my make up, or seek my advice over a boy. Would you slam the door in furry, when I would tell you no you couldn’t go to that unsupervised party? Maybe simple things, things other parents dread, but I couldn’t help to ponder what we would lose behind the walls of autism.
I have a different perspective on life than I did 7 years ago. When you were still just a kid, and I was barely an adult. Back when we seemed to have the world at our fingertips. I thought I knew it all and together we seemed to fit. We both had a passion for life that couldn’t be swayed by a diagnosis. Somehow it seemed easier, even though I was just a clueless single mom struggling to make ends meet. We didn’t have a steady home for long, before we’d jump to another. I seemed naive in “love” and jumped at the possibility of someone to be your father. I learned soon enough, and eventually found the right kind of love. I became more selfish, I know you seen it too. I traded our daughter dates for family days at the zoo. You weren’t so fond of this, you preferred different things, but I still tried to make you fit. I went from being your best friend, to a mother of sternness. I reached past your limitations and encouraged you to at least try. I think you formed a resentment of our new way of life as you’d become more agitated in public outings. Sometimes I had no choice but to leave with you, as the rest of our family stayed behind. We sat in the car listening to a soothing tune as I watched the rest of our family from a distance, their laughter barely an echo over your helpless cries. It was a moment of dread, a moment of guilt and self-pity. As I found anger of my own, I fought back my own desperate tears and struggled to push those feelings of angst aside. How could I dare feel them, how could I ever blame the chains that autism had on you? I didn’t let you see it, and I forced a calm in my voice as I asked you if you were better now, if we could please go rejoin your brothers and sister. But you wouldn’t budge, and made it clear it was time to go. So we all loaded up and made the silent ride home. I couldn’t speak for awhile after that. I held it together like a mother should. We went on day after day, prioritizing everything around you. We stopped going to outings and sometimes cancelled family plans last minute because it became too much for you to handle.
You turned 12 last August and ventured into middle school. We had long been settled down as a family a few years before. Eventually I married the man who showed me the right way to love. He understood our world and welcomed you. We gave you another brother and I was afraid of how you would feel. It was no longer just “us” you no longer had me at your beck and call. You had a lot of support at school and thrived in the attention, but when you came home, It was hard to share me with your little brother. Our bond grew a short distance, and your obsessions with the medical world became greater. I remember sheltering your little brother from the darkness of your outbursts. As he would lay content In his swing oblivious to noise of your screams from the other room, I’d wrap you In a blanket, and attempt to soothe your tears. You’d throw things across your room, putting holes in our brand new walls, shattering things that came with a hefty cost. But I wouldn’t let the price of those things break what we had built. So with patience gathered over time, I slowly cleaned up and spoke to you calmly until you came out of your spell.
This was only the beginning as the inevitable wrath of Mother Nature took its course. Your confusion of your changing body and inability to express yourself would often leave you in shambles several times a day. It soon became apparent that your transformation into becoming a women had begun.
Now I sit, with another year behind as another August begins its fast approach. An unexpected reminder that you will be 13 in less than 22 days.
Our home is busier now, with 2 more on the way. I do what’s most expected of me, as a wife and a mother. I still look ahead sometimes and wish for those simple things, as your teenage years are approaching it’s become more real to me. Knowing you won’t drive a car, or maybe even bat an eyelash at a boy. It’s still hard to fully grasp, but a reality I’ve learned to accept.
You still struggle to speak more than a few words at a time, but sometimes your anger is different than just a symptom of Autism. Sometimes I catch a glimpse of an average teenage girl.
Today when I said to you “No, I make the rules!” you rebutted quickly with a surprising response. You told me that you make the rules and that you didn’t like me. You said that you were leaving as you stomped down the hall to your room and slammed the door in my face. I had to hide the smile forming behind my stern lips, and turned to chuckle quietly. Because behind that shell of autism, there was just a hint of you. A promise of hope, sugar coated with rebellion, a glimmer of a future.
It was only a few seconds, a small portion of our day, but it was enough to make me realize that despite my attempts to shelter you from things that upset you, it’s actually the things that I’ve pushed you to do that have taught you.
I still don’t talk much about it, I sometimes struggle with the baracades autism has placed, but I’m also still learning. I’m learning to maintain hope, learning to embrace tiny moments, and learning to laugh at the irony while focusing on tomorrow.
So to my tween daughter who has autism, I know we aren’t the best friends I once tried to be. I know I’m often just the mean mom who pushes you to do more, but I want you to know that you not defined by “Autism”. You are far more capable than being at the end of a spectrum. You are my daughter Kaylee, who is transforming into a women with thoughts and feelings all her own. You are my greatest test and tenacious lesson. You may never look back one day and thank me for my perseverance as your mother, but I don’t need to hear your words when I have your actions to show me. So when you get a little bossy, like you did about 5 minutes ago, and I snap back at you with rigor in my voice, just know that inside I’m smiling. I’m smiling because I never thought we’d come this far, or that we’d ever sustain a 2 way argument. I truly never believed your words would go past the walls of autism.
So with pride and promise, hope and love, sincerely your
annoying, pushy, unrelenting mom.
mitchelleanne84 