Monday, January 5, 2015

Dear Autism,

Dear Autism,
I hate you. I hate you for taking my son’s childhood from him, from me. When he should have been absorbing information from his environment, you stood between him and understanding the world around him. When he should have been playing with his brothers and sisters he was at therapies trying to fight through the fog that you create in his world. When I should have been watching him grow and develop I had to watch him withdraw and struggle because you threw so many obstacles in his way. You cost us tens of thousands of dollars Autism. When my son should have been playing with toys, you had him lining them up and spinning them. When he should have been pretending, you had him staring at ceiling fans, obsessing over the vacuum cleaner, and looking at his reflection. When he should have been playing in the dirt, you had him washing and rewashing his hands. You stole his language when he was two. You stole the sparkle right out of his eyes. It was there when he was a baby. And then…. it was gone. You showed up and it was gone. You replaced that sparkle with an anxiety that I could not console. No child should have to endure all the anxiety you burden him with. I hate you Autism. I love my son, but I hate you.

But Autism,
Tate, age four

You did not steal everything. You did not steal his sweet spirit. You did not steal his smile. You did not steal his ability to communicate or his determination. You did not steal all the laughter and you certainly did not steal any of our love. I know you are strong and take more from some than others. Did you go easy on my son for a reason? Did you show up too late to take it all? Did birth order play a part? Was my son just too strong for you? Or did all the therapies start early enough and intensely enough to thwart your best efforts?

I hate you. Yet, not everything you have done has been bad. I have learned so much from you, not just acronyms and statistics, best practice therapies and how to bargain with public school staff. I have learned that little people with special needs are just as amazing and as easy to love as little people without special needs. I have learned that little people with special needs grow up to be big people with special needs and neither are scary or intimidating as I once imagined they might be. You have taught me that people with special needs are all just people, like the rest of us. You have taught me how to love bigger, stronger, harder, and deeper. You have taught me so much about compromise and understanding. My heart is fuller and my empathy skills have been magnified. In spite of the few good things you have done, I still hate you.

I hate you. Nevertheless, I must thank you for something Autism. You have introduced me to a community of amazing people. I cannot imagine what my life would be like having never met some of the people I know now. Many of these individuals have changed my life for the better. They have become some of my closest friends. Who knew my life would be richer for meeting so many therapists, advocates, teachers, families, and students? Maybe you did; but I still hate you.

Smith kids, 2002
You often ruin families financially. You make lives hard. You do your best to cause hardship and division, and ruin marriages. But sometimes, you take a strong marriage and make it even stronger. You tried very hard to cause jealousy and resentment in my son’s siblings. My kids stepped up to the challenge you issued them though. My kids help their youngest brother fight through the fog and confusion you cause him. You, Autism, took parts of their childhood too and robbed them of an enormousness amount of their mother’s attention. Perhaps I should thank you for that as well. My children are stronger and better because they know you. You have taught them lessons in empathy and compassion they never would have learned if you had not intruded on our lives.

Dear Autism,
I hate you. I hate you for taking my son’s future from him, from me. When he should be reading novels, he will be reading picture books and simple chapter books and struggling to comprehend what they are saying. When he should be learning to drive you will be standing between him and a drivers license. You will make dating impossible. When he is old enough to go off to college you will not allow it. My son’s peers will get jobs and earn paychecks but you will not even allow my son to understand the value of a dollar or how to count coins and make change. When my son occasionally speaks of getting married and having children I know you are there, always there, making his dreams of the future unrealistic. I hate you Autism. I love my son, but I hate you.

My husband and I are making plans for retirement. You try to get in the way but we plan around you. We speak of the trips we hope to take and we know that we are not making plans for just two. We are making plans for the two of us, our adult son, and you. You will always be with us Autism. And when we are gone? One of those siblings that you have made so strong will carry on with their youngest brother and you. He will be loved and you will be hated then as well. I hate you Autism. I really hate you.

Oh, and one more thing Autism... If your goal was to make me bitter, you have failed. I live with a song in my heart and a smile on my face. My son makes me so happy and proud. All my children do. It is only you I hate Autism; but you do not rule my life or define who we are. You have taken so much from us but you cannot steal our happiness.

Smith kids, December 2014

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  1. I've had several of the same thoughts about autism. My kiddo is 4 now and still struggles, but he's improved quite a bit with his daily therapy.