To the person at peace with Autism:
I have seen your comments on my favorite blogs. I have thought about your stance. I could feel your frustration with mine. I can imagine and see your side of this. But I would be lying if I said I fully understood it. And I don’t think you fully understand mine. But I hope you can try to understand my thoughts as much as I am trying to understand yours.
From the moment I gave birth to my beautiful girl, I have never felt so in tune with another human as I did her. She was my buddy from the start. Her laughter could cure something serious, I am sure of it. She makes everyone around her a better person. And I do not believe that if I took her autism away that these and all of her other awesome qualities would disappear. I don’t think autism gave her all those extraordinary qualities.
And so this is where we differ.
Which brings me to this fact I have gathered, you seem to hate the word “cure”. Where as I long for it!
Every time she punches herself in the head, I long for it.
Every time she refuses to eat, I long for it.
Every time she doubles over in pain, I long for it.
Every time she bites her arms and legs and she breaks the skin, I long for it.
Every time I can’t make her feel better, I long for it.
Every time I have the dream of her coming to my bed side and asking me to make her some pancakes and tell me she loves me, I long for it.
Every time I see her longing to want to verbally tell me something, I long for it.
When I change my 10 year old’s diaper, I long for it.
When nothing ever comes easy for her, I long for it.
When I think about her never falling in love, having a best friend, getting to experience any right of passage, I long for it.
And at most, I worry about when I am gone and who will care for her and love her as much as I do, I long for it.
I long for it because I think that without autism, these struggles would have never existed for my girl.
You see, she can’t get on the computer and argue her point. She and I can’t discuss how she feels about it. Her struggles are so far beyond that. And by saying that I want her to have the cure, the hypothetical “magic pill”, I am not saying that SHE is not awesome. And I am not saying that you or your child are not awesome. Because I truly believe you are. And I am not saying that your’s or your child’s autism has not brought you joy.
But I am saying that is not our autism.
And I would NEVER want you or your child to change anything about you that you would not want to. And I will advocate for that all day! But by God, I will also advocate for my daughter to have a chance to have a cure. I will call attention to the needed research and funding. And I will have zero shame about it too. And I hope you can see where I am coming from.
This is a huge spectrum we all live under. There are no apples to apples. So I hope you know I am not against you in any way. I am just number one here for her!
Lots of Love,