A Letter to my Daughter Who Has ASD

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Hey Baby,
It’s mommy. This letter is to you, and about you, but I have no intention of your ever reading these words. More than anything I want you to know how much I love you and how proud I am of you every single day for both your smallest accomplishments and your greatest achievements. I am, and will always be, your biggest cheerleader in this life and wherever possible I will protect you from the ugliness and the cruelties that will inevitably come your way.
You have Autism Spectrum Disorder. You know this. I have explained it to you in the simplest way I can. You know that how your mind thinks and how your body acts is sometimes different from those around you. Although your Autism makes you different, you must always remember and believe that you are never less!
You are getting to be such a big girl – 8 already! And as you get older I see that you are more in tuned to the actions of others towards you, and the comments said to you, because of your Autism. I listen calmly while you recount how those girls told you that you couldn’t play with them when you asked. And I try not to react when you tell me how that older boy at school was mean to you and told you that you had a disease. While you cry and try to piece together your fragmented thoughts so that you can give voice to them, I do my best to comfort you. I do my very best to make you believe that you are beautiful – inside and out – and perfect just the way you are. It is not you that has the disease, it is them. They are sick with ignorance and unkindness.
What you don’t know is that long after I have dried your tears and done my best to calm your spirit, I sit alone on the front porch or lean against a door frame and cry. I sob, actually, until the tears are sliding off of my chin and I think that it is possible to feel my heart breaking. The pain I feel for the indignities you suffer on a daily basis, and will have to endure for the rest of your life, cuts me to the core. And there are days when overwhelming sadness threatens to engulf me and I’m not certain if I’ll be able to put up a brave enough front for you not to notice. But this part of me you’ll never see. The part of me that hurts for you, cries for you, is enraged for you – that part of me I will keep hidden from you. I have to be your protector and your stronghold, your soft pillow to land on. I have to be your mother.
What I also can’t tell you is that having Autism is not a life I would ever have chosen for you. Do you remember a couple of years ago when I was so sick and in the hospital? At the time there was the possibility that I might have lost my arm to disease. On more than one occasion I have said that I would have given my arm if it would have meant that you did not have to live with Autism. But we don’t get to make those choices in this life and so while my pain was temporary, yours is ongoing.
And it’s not just kids who do not understand your differences and who can be so cruel with their words and actions, it’s adults as well. You will never know about the pediatrician who told me to prepare myself that you might never go to high school and who called you “retarded”. You will never know about the school teacher who described to me the experience of having a child with Autism as “thinking you were going to Paris and winding up in Holland”. You will never know about the woman on the playground who said that I should “better police you” because you were having difficulty waiting your turn in line for the monkey bars. You will never know because it’s me who takes every slap across the face, every punch to the gut, every stab to the soul. I am your mother and I endure that pain so that you do not have to. But God it hurts. It hurts so badly.
And I know that I’m not supposed to give voice to these hideous feelings and thoughts. At least that’s what society would tell you. But they are my ‘truth’. And if I don’t stick my fingers down my throat and purge all of this ugliness I’m afraid that it will breed and multiply and destroy me. And I can’t allow that to happen because you need me – will most likely always need me.
I wish that I could pick you up and smother you in love and wrap you in self-acceptance and strength and courage and whisk you far away to a place where no one could ever hurt you. But that is not reality. The reality is that life will not always be easy for you. And although there will be some walks that you will have to take alone, remember that when you have finished I will always be waiting for you with opened arms.
Autism is a part of you and a part of me. But it is all of you – body, spirit and soul – that is the very best part of my life! Until the day that I draw my final breath I promise to raise awareness and understanding for your daily challenges, and fight for your acceptance and inclusion. And while you will never read these words, know that putting them on paper was something that I had to do.

 

I love you.

Mommy

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