Posted by Anonymous.
I have an autistic son who is truly a bit of God broken off and fallen to this earth. I am fortunate in a a million ways that he is oh... let's say autism-lite. He has none of the most challenging behavioral and cognitive elements of the disorder and his therapy is moving faster than anyone could have imagined. I am in no way brave about this, and his diagnosis did very nearly turn me to dust, but recently someone asked that I write a letter to her friend, a stranger, who is struggling with her daughter's recent diagnosis. So I gave it my best shot.
This diagnosis is a pointing finger and nothing more. And now it’s my turn to whisper the important words--words that flicker just brightly enough to keep you from falling the whole hard way down: Your beautiful child remains your beautiful child, regardless of where a finger points. Mothers of auties pass those words down to new mothers of auties like some families pass down silver, and it may well be that this one act and these few words are the single speck of autism that we mothers hold in common.
Autism is so many things, so many different ways of being. People will ask you “what is autism?” Believe me, they’ll ask you all sorts of things, but when they ask this particular question, they may as well ask, “what is skin?” How do you answer? How can you? But since no mother begins this trip with answers and since you cannot give what you don’t yet have, leave it, just leave it. . Also, it’s very important right now that you pack lightly, so you must leave other people’s stuff behind. This is your trip and that pointing finger is where you start.
Take this road through whatever terrain you must--anger, grief, frustration--and know that you will come out the other side a changed and stronger mother. Go ahead and take the long road with all the hills and muddy spots. Stop where you feel the need, think a lot about turning around, and understand that you will always bitch about why you have to do all the damned driving. But you will drive and drive. And then drive some more. You will keep moving forward, I promise.
Claim your place now among like-minded mothers and know that we are tough. We will stand with you shoulder-to-shoulder, stretch mark- to-stretch mark because we have all done the drive, in our own way, at our own speed with our own stretch of muddy spots.
My autie is a million kinds of magic to me. Just as he had no words for the first five-ish years of his life, nor do I have words to explain our bond. His everyday obstacles show up on time every day, but they loom only as large as we allow. So often, too often, we show off those obstacles—we set them apart and make absolutely certain that we can say, “That’s my kid there, and wow, will you just look at the size of his obstacles ? They are RIGHT THERE and THEY ARE HUGE.”
Let me be very clear now, that those same obstacles have no power over the magic, not the least little bit. Say that outloud to yourself right now. Good. This child sits closest to my heart and I can tell you that even in his worst moments, I can see tiny bits of my best self. He is unbridled joy. He has a lightness that comes in quite handy during the darks. And while my chaos is just boring mommy chaos, his chaos is—well, he’s often quite glorious in his chaos. My own road is occasionally strewn with his gifts of glory wrapped in sticky chaos Now, understand that these gifts are rare and precious, mostly unexpected and sometimes quite sticky. Some days you will have to look long and hard to find even the dullest one. Some days you’ll give up looking altogether. Again, please know that giving up on today can never, ever forfeit the gifts scheduled for tomorrow. Keep looking. You’ll see.
Daniel’s diagnosis shattered me like a rock hitting glass--a big ugly hard thing hitting a not very sturdy at all thing. We sat in that tiny room with the tiny chairs and filled out those very not-tiny-at-all pages of parent questionnaires and I cried. The whole time. Long pages. Lots of crying.
Not a good day, to be sure, but one that you’ve now survived. You remember the tiny room with those tiny chairs, and you surely recall filling out the stack of parent questionnaires. You might also recall that your answers were often limited to three choices: Often, Sometimes and Not At All. So do you bend your beautiful child to fit those tight little circles? Oh, you know that answer already. And when you worry that your daughter's diagnosis might change how you see her, who she is, and who she might become, that answer fits quite nicely into one of those circles.
That answer is Not At All.